Tips and Script

Hereditary Cancer and Genetic Testing

• How do I get genetic testing?
• Signs of an inherited mutation
• Genes linked to hereditary cancers
• Genetic counseling   
• Types of hereditary cancers
• Video: ABCs of Cancer Genetics
• Video: What Your Grandparents Didn't Know about Cancer Could Save Your Life
• Video: Mutations Cause Cancer

Tips for Peer Navigators  

• Matched peers who have questions around this topic are: 
  • in the very early stages of understanding whether hereditary cancer is something that might affect a family member or them; 
  • individuals who have been tested without the benefit of counseling and are looking for more information; or 
  • individuals who have just been diagnosed with cancer and are trying to determine if their cancer is hereditary or know that it is and want to learn more. 
• Your first goal is to establish which scenario applies to them. Review their profiles to help prepare for the call so you can direct them to the appropriate resources.  
• Remember that FORCE does NOT endorse genetic testing. We recommend genetic counseling, so that individuals may understand their personal risk and the implications of testing and make an informed decision that is right for them. 
• EVERYONE can benefit from genetic counseling, including people who have already tested without counseling.   
  • Note that the list of signs of hereditary cancer is not complete. Those listed are the most common signs.  
  • Also, some people may not know their family medical history (e.g., if they were adopted or are not close to their relatives). Some people may not have signs of hereditary cancer, or they may not meet guidelines for testing, but still are interested in learning more about testing. These people would also benefit from genetic counseling. 
  • The word “counseling” can be confusing. It’s important to correct the misperception/assumption that it refers to emotional counseling. If you haven’t had genetic counseling, read the section on the What is genetic counseling?  before the call so you can better explain the various elements of a counseling session.   
  • When people need help finding the closest genetics specialist, use the searchable directory on the National Society of Genetic Counselors website. If no listed counselor is within a reasonable distance to them OR they are unable/unwilling to physically visit a specialist, refer them to InformedDNA at 800-975-4819 for telephone counseling with a certified specialist.   
• PLEASE REMEMBER: FORCE supports the recommendation of genetic counseling before and after genetic testing, if possible. Testing without counseling may cause: 
  • financial issues, because a genetic counselor was not involved to assure the proper test was ordered for eligible insurance coverage; and
  • confusion about actual test results because the test and its possible results were not explained, nor were risk management options discussed prior to testing. 
    • confusion over panel testing
    • misinterpretation of results 

Suggested Script   

NAVIGATOR: “I see you are looking to better understand hereditary cancer and genetic testing.” 

NAVIGATOR: “I’m going to review the information that we have available. We have information on: 

• the signs of an inherited mutation
• the genes linked to hereditary cancers
• genetic counseling   
• How to get genetic testing
• the types of hereditary cancers"
• we also have a few helpful videos. Our webinar, "What Your Grandparents Didn't Know about Cancer Could Save Your Life" provides a basic introduction to genetic counselor and testing. Our webinar, "ABCs of Cancer Genetics" explains more about the causes of hereditary cancers and inherited gene mutations. Our short animated video, Mutations Cause Cancer explains how mutations can lead to cancer. 

NAVIGATOR: “I’ll be sending you all of this information to review. Is there anything you would like to review now?” 

If the peer has not had genetic counseling… 

NAVIGATOR: “Do you know what is involved in counseling and why we recommend it?” 

[Share the basics of genetic counseling and explain why it’s important.] 

NAVIGATOR: “Would you like me to help you find a genetic counselor?” 

Tips and Script

Paying for Counseling & Testing 

Private health insurance coverage 
Medicare coverage 
Medicaid coverage  
Financial assistance
Health insurance appeals
Webinar: Navigating Insurance Challenges When You Have a Hereditary Genetic Mutation
Webinar: Insurance & Your Legal Rights

Tips for Peer Navigators

• FORCE is not able to provide financial support for counseling or testing.  
• A typical genetic counseling session costs $200-$500. Tests range from $50-$3,000+, depending on the lab used and test ordered (a critical reason why a counselor should be involved).
• This topic is extremely complex. For example, the Affordable Care Act requires most private health insurers to pay for counseling and testing for women (not men), BUT only for BRCA mutations. Health insurers have different policies for men and for mutations other than BRCA. Also, some health insurers require genetic counseling prior to testing. Medicare covers the cost of counseling and testing only for people who have a cancer diagnosis. Medicaid policies vary by state, but the majority have coverage for BRCA and Lynch syndrome testing.
• Because you may not be able to find a quick answer to insurance questions and additional information might be required, individuals who are looking for assistance in paying for testing should first be directed to a genetic counselor who can help navigate the maze of testing, insurance and financial information. If individuals need financial support for counseling/testing, first refer to the sections based on their type of insurance.
• If someone doesn't have insurance, please refer them to the financial assistance for genetic services webpage. If private insurance has denied coverage, refer them to our health insurance appeals information or financial assistance for genetic services webpage.
• We have sample appeal letters for genetic counseling and testing on our appeals page. When the link is clicked, it automatically downloads a Microsoft Word file that the individual can personalize for their situation. 

Suggested script 

NAVIGATOR: “I see you would like information on paying for counseling and testing. Do you have health insurance? What type?” [Find out if it’s Medicare, Medicaid or another type of insurance.]

“Are you looking for help with genetic counseling or genetic testing?”

For genetic testing:

NAVIGATOR: “I recommend you speak with a genetic counselor FIRST so the counselor can help you navigate financial issues.”  

For counseling:

NAVIGATOR: “Please tell me what type of insurance you have so I may help you.”

[Click on the corresponding link for the type of coverage they have.]

Private health insurance coverage 
Medicare coverage 
Medicaid coverage  

For no health insurance:

NAVIGATOR: “There are some lower cost options for counseling and testing. Limited financial assistance is available. I will send you information on labs that may offer help.”

For someone who has insurance, but the insurer doesn’t want to cover:

NAVIGATOR: “Since you are having a difficult time with your health insurer, you may want to look at the health insurance appeals section on our website. We provide a sample insurance appeal letter that you can download and modify to help you file an appeal with your insurance company. I will send you the link.”

For individuals who have different concerns, ask:

NAVIGATOR: “Are you open to my collecting some additional information so that we can research your situation and identify possible resources to help you?"

If peer says yes, gather and send the following information to [email protected] so a FORCE staff member can identify possible resources:

• individual’s name and email address  
• explanation of their situation and what help is needed  
• type of insurance (or none)  
• whether or not they have already received genetic counseling  
• state where they reside

Tips and Script

Laws & Protections 

• Patient Protection & Affordable Care Act (ACA)
• Genetic Information Nondiscrimination Act (GINA)  
• GINA protections against health insurance discrimination  
• GINA protections against discrimination in employment & wellness programs
• Health Insurance Portability & Accountability Act (HIPAA)
• Video: Your Legal Rights
• Video: Navigating Insurance Challenges When You Have a Hereditary Genetic Mutation

Tips for Peer Navigators

• FORCE is unable to provide medical advice. Nor do we provide legal advice. We have information on the laws and resources that are available to people who are concerned about or facing discrimination from their insurance company or their job. If individuals press for more support or these resources are not appropriate, gather the details and send them to [email protected].  
• ACA: The Affordable Care Act is a federal law containing several provisions that benefit people affected by cancer--banning the practice of charging more or denying health insurance coverage due to a preexisting health condition, prohibiting health plans from putting annual or lifetime dollar limits on most benefits, limiting out-of-pocket costs for medical care and more. Medicare, some Medicaid programs and a small number of private health plans (grandfathered, short-term, catastrophic coverage) are not required to follow all of the ACA rules. Note: A major misconception is that all preventive care is covered under the ACA. This is NOT the case. Only specific preventive services beginning at specific ages must be covered at 100% (e.g., mammograms starting at age 40 and colonoscopies starting at age 50). See the Insurance & Paying for Care section of our website for more details on this.
• GINA: The Genetic Information Nondiscrimination Act is a federal regulation that prohibits health insurance and employment discrimination on the basis of genetic information or test results. The law does not apply to life, long-term care or disability insurance. (Click on the GINA link above to review this section so you understand these protections.) Some states also have laws that provide additional/stronger protections. Some exceptions to GINA apply (e.g., members of the military, veterans getting healthcare through the VA and federal employees enrolled in the FEHB). See the GINA Overview for more specifics.
• HIPAA: Further federal protection for health information is available under the Health Insurance Portability and Accountability Act (HIPAA). (Click HIPAA link above for details.) 

Suggested Script

NAVIGATOR: “FORCE has information regarding laws that provide coverage for preventive services and reconstruction after mastectomy. Are you seeking general information or are you concerned that you are not receiving the coverage that you are entitled to?”

If the peer says they believe they are not getting the services they are entitled to: Determine whether it relates to preventive care/screening or something else covered under the ACA or whether it relates to the Women's Health and Cancer Rights Act (breast reconstruction, complications, etc.) found in our module on Breast Reconstruction or Going Flat.

NAVIGATOR: “I’m going to send you a link with detailed information about what must be covered and how much the insurer is required to cover. Once you understand those requirements, if you feel that you are not receiving coverage that you are entitled to from your insurer, please visit the Health Insurance Appeals section of our website for guidance and sample insurance appeal letters.” [If the issue seems critical and you think it should be escalated, ask the individual if you may share the basic information regarding the scenario with others on the team. Email the detailed information, along with the person’s name and email address, to: [email protected].]

If the peer says they are looking for general information:

NAVIGATOR: “We understand that high-risk individuals face expenses related to increased screening, surgery, etc. We do our best to stay on top of the current laws and requirements and advocate for improved coverage. I’m going to send you a link with specifics on coverage. This should help you understand your rights. If you believe that you are not receiving coverage from your insurer that you are entitled to, visit the Health Insurance Appeals section of our website for guidance and sample insurance appeal letters.”

NAVIGATOR: “FORCE has information regarding legal protections for your health and genetic information. Do you feel you are facing discrimination or looking for information on the general protections you have?”

If the peer says they are facing discrimination:   [Do not attempt to address the issue.]

NAVIGATOR: “I’m going to send you a link on what to do if you think your rights have been violated.” [If the issue seems critical and you think it should be escalated, ask the individual if you may share the basic information regarding the scenario with others on the team. Email the detailed information, along with the person’s name and email address, to [email protected].]

If the peer says they are looking for general information on protections:

NAVIGATOR: “FORCE was instrumental in passing GINA: The Genetic Information Nondiscrimination Act. GINA is a federal law that prohibits health insurance and employment discrimination on the basis of genetic information or genetic test results. I will send you a link that explains the protection provided by this law, as well as the Health Insurance Portability and Accountability Act (HIPAA). Some states have their own laws that provide additional protections. You can find a link to more information about these states in the Related Resources box on the GINA Overview webpage.”

Tips and Script

Sharing with Family 

• Benefits of sharing
• Brochure: The Genes Between Us
• Worksheet: Sharing Information with Family
• Sample letters to family members by gene
• Talking to children 
• Video: Sharing Information with Children
• Video: The Genes Between Us: How I Shared Genetics Information with My Latinx/Hispanic Relatives
• Portal: Family History and Genealogy
• CDC: Talking About Your Family History of Cancer | Bring Your Brave
• CDC: Let's Talk: Sharing Info About Your Family Cancer Risk (kognito.com)

Tips for Peer Navigators

• Some examples of information individuals may ask about or need assistance with:
  • help with preparing to share their test results: who to share with, what information to share and how to share it
  • help asking a relative to undergo testing and to inform them of their results
  • help getting a copy of their medical records or test results to share with relatives
  • support or experiences from other people who have shared genetic test results with relatives  
• Let individuals who want general information know what tools we have:
  • The sharing guide has tips, examples of different situations, a sample letter and suggestions for how to approach and speak with relatives.
  • Make sure that they understand the importance of sharing with both female and male relatives.  
  • This is a good time to ask them if they have had genetic counseling and remind them that their genetic counselor may be a good source of information, tips and sample letters. If they have not had genetic counseling, they may benefit from having a genetic counselor on their healthcare team. ->refer them to the Hereditary Cancer and Genetic Testing pathway.
  • The Centers for Disease Control and Prevention (CDC) has several tools, including an interactive tool that allows people to practice having a conversation with relatives about an inherited mutation and genetic testing. The link to the interactive tool is here: CDC: Let's Talk: Sharing Info About Your Family Cancer Risk (kognito.com).
• For individuals who are looking for support, the situation may be more difficult. REMEMBER that individuals’ experiences and family dynamics vary widely. This is a great place to share your own story, but always LISTEN first to their story. Describing how amazing your family support was may not help someone feel better if he/she is struggling with his or her own family support issues. If they would like to speak with people who have shared and had a negative response and you do not fall into this category, encourage them to post on our message boards for people in similar situations.  
• You may get people who say, “My nephew, granddaughter, etc. won’t test. What do I do?” The decision to get counseling or testing is very personal. We do not believe anyone should be forced into taking action. Empathize with their fears and recommend that individuals simply make family members aware of a possible hereditary family risk. Recommend genetic counseling so that they can learn more. Our tools in this section could help them provide information to their family. You may also want to recommend FORCE’s website as a neutral third-party resource if they want support. (FYI: In time, some family members change their outlook about testing on their own.)
• You may get questions about testing minors. In general, for inherited mutations linked to adult-onset cancers, experts recommend waiting until children reach adulthood and can make their own informed decision about testing. Genes like BRCA1 and BRCA2 and Lynch syndrome are generally linked to adult-onset cancers.
  • Exceptions include:
    • Syndromes linked to young onset cancer, including FAP (associated with an APC mutation, Cowden syndrome (associated with a PTEN mutation), Li-Fraumeni (associated with a TP53 mutation, Peutz-Jegher syndrome (associated with an STK11 mutation), and others begin screening at a younger age.
    • Some families may have a family history of very young-onset cancers.
    • Sometimes testing may change care in a minor. For example, a teenager with a breast lump may be managed differently if she tests negative or positive.
  • It is important to recommend that people consult with a genetics expert before testing their minor children.
• People may be interested in using genealogy to find more distant relatives. FORCE's personalized portal, Family History and Genealogy has resources to help them expand their family tree, find relatives through ancestry testing and connect with other people who share their same mutation. 

Suggested Script

NAVIGATOR: “I see you are looking for information on speaking with your relatives about your genetic test results or your medical information. We have tools including our sample letter to family members with information specific to your gene. Our brochures: The Genes Between Us and a Sharing Information with Family worksheet can help structure family discussions. We also have a booklet that specifically addresses talking with children. The Centers for Disease Control and Prevention (CDC) also has several tools, including an interactive tool that allows people to practice having a conversation with relatives about an inherited mutation and genetic testing. The link to the interactive tool is here: CDC: Let's Talk: Sharing Info About Your Family Cancer Risk (kognito.com). All of these tools are included in your resource guide. They are really helpful. Do you have any additional questions or concerns?”

Tips and Script

Risk Management Guidelines & Decision-Making

• Screening & risk reduction overview

• Risk & risk management guidelines by gene mutation

• Screening & risk reduction guidelines by cancer type

• Research & media coverage of screening & prevention

• Video: How Do I Decide? Finding Clarity in Decision-Making

Tips for Peer Navigators

Screening & Risk Reduction Overview

• National guidelines are developed by experts to guide the care of people who are at high risk for cancer due to an inherited mutation.
• The guidelines that we most refer to are the National Comprehensive Cancer Network (NCCN.org) guidelines. These are created by experts in cancer and genetics and they are updated every year.
• Most genes that FORCE includes on our website have NCCN guidelines that outline their care. Some of the rare genes and inherited cancer syndromes may not have guidelines or may not be found on our website. Make sure that you have them speak with a genetics expert about their individual situation and mutation to get the most up-to-date and personalized recommendations. 
• NCCN has two general levels of recommendations for their guidelines:
  • Where the guidelines say “recommend,” there is strong evidence that the intervention will improve health outcomes in people with the mutation under discussion. 
  • Where the guidelines say “consider,” the evidence may not be as strong to recommend one option over another for people with the mutation under discussion.
• There are three general strategies for managing risk:
  • screening
  • risk-reducing medication (which is often combined with screening)
  • risk-reducing surgery
• Not all cancers have options for risk management in all three categories. In some cases, screening or prevention clinical trials may be available, too.
• Diet, exercise and other healthy lifestyle interventions may influence risk for different cancers. They have also been linked to other health benefits, as well. Nevertheless, most national guidelines do not recommend relying solely on healthy lifestyle as the only strategy for managing high cancer risk. If they are interested in diet and lifestyle, remember to point them to the Wellbeing and Survivorship guidelines.

Risk & Risk Management Guidelines by Gene Mutation

• It’s important, when possible, to find out their gene mutation. This section lists the different guidelines for risk management for each gene mutation for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53.
• National guidelines for managing cancer risk are not available for all gene mutations or the cancers that they are associated with. For some cancers or genes, clinical trials may be available.

• Once they click on their gene, they need to scroll down to “Cancer Risk” to see the different types of cancer and the levels of risk for each gene.

• For risk management guidelines they need to scroll down to Tab 2 “Risk Management Options” to see the risk management guidelines for that specific gene.

• There are different risks and guidelines for different genes, even if they cause the same types of cancer. For example, mutations in both BRCA1 and CHEK2 increase breast cancer risk, but the guidelines for breast cancer risk management are different. The five genes associated with Lynch syndrome have different risks for cancer. For example, mutations in the Lynch syndrome genes MLH1 and PMS2 both cause colorectal and endometrial cancers. However, guidelines for risk management are different between the two genes.

Screening & Risk Reduction Guidelines by Cancer Type 

• This is where they can find information on specific screening and risk management options for each of these cancers: breast, colorectal, endometrial, fallopian tube, ovarian and primary peritoneal, melanoma, pancreatic and prostate.  
• Many people are overwhelmed, scared and confused about what to do and when to do it. Recommend that individuals review national guidelines and speak with their doctor regarding care. The hereditary cancer experience is extremely complicated and can be emotional; it doesn’t end when a decision has been made, or when a surgery has been completed. The decision on how to manage cancer risk and the types of medical decisions made may come with other health and emotional considerations (e.g., loss of fertility, complications of surgery, side effects from medications, biopsies if screening shows an abnormality, etc.).  Getting used to a “new normal” may take time.
• Remember that an individual’s current health and non-health reasons (such as age, marital status, parental status, health insurance, employment, financial situation or whether they have experienced family members get sick or die from cancer) may also influence their decision-making process to manage cancer risk.
• Many cancer centers may have full-service cancer screening and prevention programs that include monitoring by oncologists for individuals who are at high risk for breast and/or ovarian cancer. Individuals may want to research whether such a program exists in their area. If they do not have this type of program in their area, they may want to speak with their genetic counselor or regular healthcare provider about the best options for managing cancer risk.
• Remember that access to care varies from city to city; rural areas generally have fewer options than metropolitan areas and they may have to travel a distance for coordinated care.
• Mention our XRAY program (where we evaluate research on cancer topics) and point them to the link on articles on cancer risk, screening and prevention.

If they need emotional tools for the decision-making process, they may want to watch the video from our 2021 conference: How Do I Decide? Finding Clarity in Decision-Making.

Suggested Script   

NAVIGATOR: “Before we discuss making decisions about risk management, tell me how you’re feeling or what you're most concerned about.”

Depending on a peer’s response, you might want to say: 

NAVIGATOR: “Your reaction is normal and you have completed an important first step to gather resources. This will help empower you to make decisions with your family and doctors.”

NAVIGATOR: “There may be specific guidelines for treating cancer with certain gene mutations. Would you like me to go over any information specific to your mutation?"

NAVIGATOR: “Have you met with a genetics expert after  you received your genetic test results? They can help you make sure that you are receiving guidance specific to your mutation and situation."

If they haven't seen a genetic counselor after testing:

NAVIGATOR: "Would you like me to help you find a genetic counselor who can talk to you about your genetic test results?" 

NAVIGATOR: “I recommend that you review the national guidelines for care, so that you can put all the information together to make decisions with your doctor. I will send you these resources after our call.”  

NAVIGATOR: “Do you have any questions for me?”

Tips and Script

Cancer Screening

• List of cancers landing page
• List of genes landing page
• Breast cancer (includes screening for women & men)
• Colorectal cancer
• Endometrial cancer
• Melanoma
• Ovarian & fallopian tube cancer
• Pancreatic cancer: Types of screening
• Pancreatic cancer: Screening guidelines
• Prostate cancer
• Video: What's New in Hereditary Breast Cancer Prevention
• Video: Screening for Breast Cancer During and After Pregnancy
• Video: Should I Get Pancreatic Cancer Screening?
• Video: Should I Get Prostate Cancer Screening?
• Video: What's New in Screening for Colorectal Cancer?
• Video: Experts Discuss Hereditary Gastrointestinal Cancer Risk, Screening, Prevention and Treatment
  • Pancreatic cancer screening portion of webinar
• Video: What's New in Gynecologic Cancer Screening and Prevention?
• Video: Cancer Risks, Screening and Prevention for People with Lynch Syndrome
• Video: Cancer Risks, Screening and Prevention for People with BRCA1 or BRCA2 Mutations
• Video: Cancer Risks, Screening and Prevention for People with ATM, CHEK2, PALB2 and Other Genes
• XRAY reviews of research related to cancer screening

Tips for Peer Navigators

• People interested in this topic want to learn about screening options for different cancer types and different genes.
• Most of the genes that we cover on the FORCE website have national expert guidelines (usually from NCCN) that are updated every year. As the guidelines are updated, we update the information on the FORCE website. 
• Depending on their healthcare team and whether or not they have spoken to a genetic counselor, they may or may not be aware of the national guidelines for screening and prevention for their gene. 
• It’s important to note that some cancers are hard to detect and there may not be national guidelines for screening for some hereditary cancers. Conversely, some cancers have more than one type of screening or risk management option and they may have to make decisions about what to do. 
• Review the associated risks and the recommended guidelines for an individual’s specific mutation so that you understand their situation. 

Once you click on the link for the gene, scroll down to get to the section on cancer risks (first section):

The next section has the guideline recommendations for risk management:

• Different genes may be associated with different risks and have separate guidelines, even if they cause similar cancers. For example, expert guidelines for when to begin colonoscopies differs between Lynch syndrome genes. People with mutations in MLH1, MSH2 and EPCAM are recommended to begin colonoscopy screening at a different age than people with mutations in MSH6 and PMS2.
• Family history might also influence which screenings are recommended and when to start. 
• Encourage individuals to talk with their doctors and genetic counselor about screenings and to learn which ones are right for them.

If they are interested in screening options for a particular type of cancer, we also recommend that you review the information on risk management by cancer type: 

Once you select a cancer type from the menu, you are taken to a landing page of risks, risk-management and treatment for that cancer type. The risk management option is usually the middle option. 

• Guidelines recommend that people at high risk for cancer learn the signs and symptoms. These symptoms can be found in the risk-management section for each of the cancers that we cover. 
• There may not be screening options available for every type of cancer. Even when there are screening options, they may not find cancer early. For example, ovarian cancer is hard to detect, and the NCCN, in general, doesn’t endorse ovarian cancer screening, but includes it as an “option.”
• Clinical trials looking at more effective screening methods may be available (for example, our featured research page has ovarian, prostate and pancreatic cancer screening studies for certain high-risk people).
• Heightened screening options for some cancers may be available to people who have not had testing, but have a significant family history and also for people who have a strong family history of cancer, but have no known family mutation. Some people may not be ready to get genetic testing, but want to learn what they can do to manage risk due to their family history of cancer.
• Suggest that they take a look at our expert videos on screening for high risk people:
  • Video: Should I Get Pancreatic Cancer Screening?
  • Video: Should I Get Prostate Cancer Screening?
  • Video: What's New in Screening for Colorectal Cancer?
  • Video: Experts Discuss Hereditary Gastrointestinal Cancer Risk, Screening, Prevention and Treatment
    • Pancreatic cancer screening portion of webinar
  • Video: What's New in Gynecologic Cancer Screening and Prevention?
  • Video: Screening for Breast Cancer During and After Pregnancy
  • Video: Cancer Risks, Screening and Prevention for People with Lynch Syndrome
  • Video: Cancer Risks, Screening and Prevention for People with BRCA1 or BRCA2 Mutations
  • Video: Cancer Risks, Screening and Prevention for People with ATM, CHEK2, PALB2 and Other Genes
• XRAY reviews of research related to cancer screening: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link on articles on wellbeing and survivorship.

Suggested Script

NAVIGATOR: “There are national guidelines that include recommendations on cancer screening. Different gene mutations are associated with different cancer risks and guidelines. Has your genetic counselor or doctor gone over your cancer risks, signs and symptoms, and risk management options with you?”

NAVIGATOR: “With surveillance, different screenings may be available for breast, colorectal, endometrial, ovarian, prostate and pancreatic cancer and melanoma. After our call, I will send you information on national recommended guidelines for the cancers that you are interested in.”

NAVIGATOR: “Would you like me to review any specific symptoms or screening options with you now?”

Tips and Script

Reducing Risk with Medication

• List of cancers landing page
• List of genes landing page
• Breast cancer
• Colorectal cancer
• Endometrial cancer 
• Ovarian cancer
• Video: What's New in Hereditary Breast Cancer Prevention
• XRAY reviews of research related to cancer prevention

Tips for Peer Navigators  

• People interested in this topic want to learn about the different types of medications available to reduce cancer risk.
• Review this section on the website to learn more.
• Medication reduces, but does not eliminate, cancer risk.
• Medications may cause side effects.
• Many types of cancer do not have medications that can lower the risk.
• Clinical trials looking at medications to lower cancer risk may be available. This includes studies looking at new types of vaccines to lower the risk for cancer. Check our featured research page, matching tool and clinicaltrials.gov. 
• People who choose risk-reducing medication will also need to continue screening.
• Review the associated risks and different risk management guidelines for an individual’s specific mutation so that you understand their situation. Different genes have different guidelines for risk management.

Once you click on the link for the gene, scroll down to get to the section on cancer risks (first section):

The next section has the guideline recommendations for risk management:

• Different genes may be associated with different risks and have separate guidelines, even if they cause similar cancers. 

If they are interested in information on prevention for a particular type of cancer, we also recommend that you review the information on risk management by cancer type: 

Once you select a cancer type from the menu, you are taken to a landing page of risks, risk-management and treatment for that cancer type. The risk management option is usually the middle option. 

Suggested Script

NAVIGATOR: “Medications may be available to help reduce the risk for certain cancers, including breast, colorectal, endometrial and ovarian. Each one has benefits and potential side effects. I will send you information so you can read about each one and discuss them with your doctor.”

NAVIGATOR: “Medications can lower cancer risk, but some risk still remains, so people who take risk-reducing medications also need screening for cancer.”

NAVIGATOR: “There are clinical trials testing new ways to lower the risk for cancer using medications or vaccines. Would you like me to help you try to find a study that you are eligible for?”

Tips and Script

Reducing Risk with Surgery

• List of cancers landing page
• List of genes landing page
• Mastectomy
• Colectomy
• Post-mastectomy photo gallery
• Decision Checklist: Considering Mastectomy with or without Reconstruction
• Tip Sheet: Mastectomy Preparation and Recovery
• Support Meetings: Mastectomy Prep & Recovery
• Surgery to remove ovaries and fallopian tubes 
• Hysterectomy for women with a BRCA1 or BRCA2 mutation
• Hysterectomy for women with increased endometrial cancer risk
• Video: What's New in Gynecologic Cancer Screening and Prevention?
• Checklist: Considering Risk-Reducing Surgery for Ovarian or Endometrial Cancer
• Tip Sheet: Gynecologic Surgery Preparation and Recovery
• Insurance and paying for risk-reducing surgery
• Finding surgeon referrals on our message boards
• SOROCk: A Study to Compare Two Surgical Procedures in Women with BRCA1 Mutations to Assess Reduced Risk of Ovarian Cancer
• XRAY reviews of research related to cancer prevention

Tips for Peer Navigators

• People interested in this topic want to learn about:
  • guidelines for managing risk based on their mutation
  • different types of surgeries available to reduce cancer risk
  • benefits and risks of surgery
  • side effects of surgery
  • other options for risk management besides surgery
  • how to find a surgeon who specializes in the surgery
• Review the associated risks and different risk management guidelines for an individual’s specific mutation so that you understand their situation. Different genes have different guidelines for risk management.

Once you click on the link for the gene, scroll down to get to the section on cancer risks (first section):

The next section has the guideline recommendations for risk management:

• Different genes may be associated with different risks and have separate guidelines, even if they cause similar cancers. People with a mutation in BRCA1 are recommended to consider risk-reducing oophorectomy at a younger age than people with a mutation in RAD51C or RAD51D.
• Family history might also influence which surgeries are recommended and when. 
• Encourage individuals to talk with their doctors and genetic counselor about screenings and to learn which ones are right for them.

If they are interested in information on surgery for a particular type of cancer, we also recommend that you review the information on risk management by cancer type: 

Once you select a cancer type from the menu, you are taken to a landing page of risks, risk-management and treatment for that cancer type. The risk management option is usually the middle option. 

• Surgery can be an effective risk management strategy, but it comes with risks and limitations. There is still risk for cancer, even after surgery.
• Different mutations are linked to different risks for cancers. Some mutations increase the risk for one, two or multiple types of cancers.
• Different genes have separate guidelines, even if they cause similar cancers. It may be helpful to review the guidelines for your individual's mutation and make sure that they are aware of the guidelines, too. 
  • For example, NCCN may use the term “recommend” for risk-reducing surgery for women with some genes where clear benefit has been shown for women who have surgery. They may use the term “consider” for surgery in women where the data is less clear that the risks outweigh the benefits, or more information is needed.
• Some people may not know the terminology for their surgery. You may want to ask them questions about what their surgery is for, so that you can provide them with the relevant information they are looking for.   
  • Removal of one breast is a mastectomy. Removal of both breasts is a bilateral mastectomy. There are different types of mastectomies. These are outlined in the mastectomy section. 
  • Removal of the ovaries is an oophorectomy; removal of both ovaries is a bilateral oophorectomy.
  • Removal of one fallopian tube is a salpingectomy; removal of both fallopian tubes is a bilateral salpingectomy.      
  • Removal of the fallopian tubes and ovaries is a bilateral salpingo-oophorectomy (BSO) or risk-reducing salpingo-oophorectomy (RRSO).  
  • Removal of the uterus alone is a hysterectomy.
  • Removal of the uterus, ovaries and fallopian tubes is a salpingo-oophorectomy with hysterectomy.
  • Removal of the colon is a colectomy. Depending on the procedure, other terminology may be used. You can refer to our colectomy page for the different types of surgery and terminology used. 
• People can post their request for surgeon referrals through our message boards. Registration is required. It also allows people to private message without having to share their contact information. 

 Individuals trying to make decisions about surgery may wish to use our Checklist Wizard, a tool that they can personalize to create a list of questions to ask their doctor to help them make decisions about whether or not to have surgery, which surgery to have and timing. Individuals may also need tips to help prepare for and recover from surgery. Our Checklist Wizard can also be used to create a personalized tip sheet to help them prepare for risk-reducing surgery. 

• Currently there are two different decision checklists:
  • Decision Checklist: Considering Mastectomy with or without Reconstruction
  • Decision Checklist: Considering Risk-Reducing Surgery for Ovarian or Endometrial Cancer
• The same Checklist Wizard tool can help them create personalized tip sheets to prepare for surgery. Currently there are two different tip sheets in this section of the website:
  • Tip Sheet: Mastectomy Preparation and Recovery
  • Tip Sheet: Gynecologic Surgery Preparation and Recovery

To help them navigate the Checklist Wizard: 

Scroll down the page to select which checklist or tip sheet they wish to choose:

Once they select which checklist or tip sheet they want to print:

This opens up the different topics for each checklist. They can select which questions they want to include on their page. For each section they have the option of choosing which questions they want on their personalized list.

Once they have completed their checklist, they should hit the "Save Changes" button.

Their checklist or tip sheet is now ready for them to download the file and save it to their computer for sharing or printing. 

• Individuals should consult with their doctors about these questions, because a woman’s personal situation dictates what can be expected regarding recovery time, pain levels, return to driving, return to work and menopause issues.
• Individuals may ask you what you decided and what you have done. Feel free to share your experience, if asked.
• In the last several years, research has suggested that many of the ovarian cancers in women with mutations may start in the fallopian tubes. For this reason, scientists are studying the effects of removal of the fallopian tubes only before menopause, followed by oophorectomy after menopause. Research has not yet shown that this approach lowers the risk for cancer. The large study called SOROCk is looking at this study but the results won't be available for many more years. 

Mastectomy

• Some women who undergo a mastectomy may or may not choose to have reconstruction. Additional information is available in our reconstruction module for those who want to learn about their options.
• Different mutations have different breast cancer risks and guidelines. some genes linked to increased breast cancer risk do not have guidelines recommending mastectomy. Despite this, some women may choose the surgery for personal or medical reasons. It's important to respect their decision, but to also make sure that they have been told about current guidelines.  
• There are no national guidelines outlining long-term screening of women after risk-reducing mastectomy. Experts recommend that women who notice lumps or other changes in their breast report them to their healthcare provider for appropriate follow-up.  Women with implants may be recommended to have regular breast MRIs to assure that the implant hasn’t ruptured.

Surgery to remove ovaries & fallopian tubes (RRSO)

• Before having an oophorectomy with or without hysterectomy, women may want to talk with their doctors about how they can manage possible symptoms of surgical menopause. The choice of surgery and a woman's personal and medical history may affect their options for managing menopause with or without hormone replacement therapy.
• Early surgical menopause may increase some other health risks and many experts recommend long-term follow-up to monitor bone density and heart health. Our module on menopause has additional information and tips for early menopause.
• Different genes have separate guidelines, even if they cause similar cancers. It may be helpful for you to review the guidelines for your individual's mutation and make sure that they are aware of the guidelines too. 
  • For example, NCCN uses the term “recommend” for RRSO for women with BRCA1 and BRCA2 mutations. NCCN uses the term “consider” for RRSO in women with mutations in the Lynch syndrome genes MLH1, MSH2, MSH6 and EPCAM and they state there is not enough evidence to recommend RRSO for women with a mutation in the Lynch syndrome gene PMS2.
• Currently, there are no national guidelines for long-term gynecologic screening of women who have undergone risk-reducing salpingo-oophorectomy. Follow-up varies based on whether or not a hysterectomy was part of the procedure and whether or not hormone replacement therapy was prescribed.
• For women with an intact uterus, experts recommend continuing annual pelvic exam, having Pap smears as recommended by their healthcare providers and knowing the signs and symptoms of uterine cancer (if you did not have a hysterectomy). Any signs of unexpected bleeding or spotting should be reported to your gynecologist or gynecological oncologist.
• For women who are not ready to remove their ovaries but wish to reduce their risk, salpingectomy (removal of the tubes alone) may be an option. Experts recommend a "completion oophorectomy" (removing the ovaries in a second surgery) as soon as they are ready.

Hysterectomy for women with a BRCA1 or BRCA2 mutation

• Many women who are at high risk for ovarian and fallopian tube cancer, but average risk for endometrial cancer, wonder if they should also have a hysterectomy when their ovaries and fallopian tubes are removed (for example, women with BRCA1 or BRCA2 mutations). This is a very personal decision. They should speak with their genetic counselor to understand their risk for uterine cancer and discuss the pros and cons of each alternative with their doctor.

Hysterectomy for women with increased endometrial cancer risk

• Women who are at high risk for uterine cancer may wonder if they should remove their ovaries. The benefits and risks of each surgery are outlined in the surgery sections for endometrial cancer and for ovarian and fallopian tube cancer.
• XRAY reviews of research related to cancer prevention: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link on articles on cancer prevention. 

Colectomy for people with very high risk for colorectal cancer

• People with some conditions associated with a very high risk for colorectal cancer may choose risk-reducing removal of their colon (colectomy). This includes people with a condition known as Familial Adenomatous Polyposis (FAP), MUTYH Associated Polyposis (MAP), some people with Lynch syndrome who have been diagnosed with cancer and other syndromes. Depending on their mutation and history of cancer and/or polyps, doctors may recommend certain procedures to remove the colon, rectum, and other at-risk organs in the gastrointestinal tract. 

Gastrectomy for people with CDH1 mutations

• People with CDH1 mutations have a very high risk for a type of stomach cancer known as hereditary diffuse gastric cancer. National guidelines include risk-reducing gastrectomy for people with CDH1 mutations. Importantly as research continues on this gene, there may be a role for surveillance for people with this mutation. 

Suggested Script

NAVIGATOR: “There are national guidelines that include recommendations on who should consider risk-reducing surgery. Different gene mutations are associated with different cancer risks and guidelines. Current national guidelines vary on recommendations for risk-reducing surgery based on an individual’s mutation and family history of cancer. It’s important to speak with a genetics expert to understand your level of risk in order to make informed decisions about your risk management options, including surgery. Have you seen a genetics expert to understand your risk for cancer?" 

If the peer says "no":

NAVIGATOR: “Would you like me to help you find a genetic counselor who can help you understand your cancer risk?" 

If the peer says "yes":

Direct them to the information page on genetic counseling and the lookup tool for the National Society of Genetic Counselors to help them find a counselor in their area.

NAVIGATOR: "Has your doctor gone over your risk management options with you?”

If the peer says "no":

Make sure that they receive the risk management topic and a link to risk management recommendations for people with their mutation.

NAVIGATOR: “High-risk women can reduce cancer risk with surgery. Surgery can drastically reduce cancer risk, although some small risks may remain after surgery. Nothing completely prevents cancer, so talk with your doctor about follow-up care.”

NAVIGATOR: “Surgery has pros and cons and can have side effects. I’ll send you information regarding mastectomy, oophorectomy and hysterectomy, including questions to ask your surgeons and checklists to prepare for these surgeries. Would you like to know more about a particular surgery or what to expect?” 

NAVIGATOR: “I know that this is a very personal and difficult decision and one that should be discussed with your family and doctors. Remember what may have worked for one person may or may not be the right option for you. We are all individuals, and the best decision(s) you can make will be based on your own personal situation.”

For women considering mastectomy

NAVIGATOR: “Current national guidelines don’t address all mutations that may be associated with increased breast cancer risk, but as more research becomes available, new guidelines will be established for these other genes.”

NAVIGATOR: “The decision to remove your breasts and when to have surgery is very personal. If you’re interested in mastectomy, it is important to find a surgeon who has experience performing risk-reducing surgery on high-risk women.”

NAVIGATOR: “Have you considered whether or not you would like breast reconstruction at the time of surgery? FORCE has information and resources for people considering their options to go flat or have reconstruction. Would you like me to go over that information with you?”

For women considering risk-reducing salpingo-oophorectomy (removal of ovaries and fallopian tubes)

NAVIGATOR: “There are no great screening options for ovarian and fallopian tube cancers. For this reason, experts recommend some women at high risk for these cancers remove their ovaries and tubes after child-bearing is complete. Recommendations and ages for surgery vary by gene mutation.”

NAVIGATOR: “Current national guidelines don’t address all mutations that may be associated with increased ovarian cancer risk, but as more research becomes available, new guidelines will be established for these other genes.”

NAVIGATOR: “The decision to remove your ovaries and when to have surgery is very personal; removing the ovaries before menopause causes surgical menopause. If you’re interested in surgery to reduce ovarian cancer risk, it is important to find a surgeon who has experience performing preventive surgery on high-risk women.”  

NAVIGATOR: “Current national guidelines don’t address all mutations that may be associated with increased ovarian cancer risk, but as more research becomes available, new guidelines will be established for these other genes.”

NAVIGATOR: “The decision to remove your ovaries and when to have surgery is very personal; removing the ovaries before menopause causes surgical menopause. If you’re interested in surgery to reduce ovarian cancer risk, it is important to find a surgeon who has experience performing preventive surgery on high-risk women.”  

NAVIGATOR: “You may want to consult our message boards to see if any members have recommendations for a surgeon in your area.”

For women considering risk-reducing salpingectomy (removal of the fallopian tubes only)

NAVIGATOR: “There are no great screening options for ovarian and fallopian tube cancers. Not all women are ready to remove their ovaries and tubes. There is emerging research that many ovarian cancers begin in the fallopian tubes and that removal of the fallopian tubes alone can lower the risk for ovarian cancer. Experts are not certain how much this surgery lowers risk in women with mutations. For women not ready to experience surgical menopause, salpingectomy (tubes-only surgery) may be an option. Experts do recommend that women who choose salpingectomy have a second surgery to remove their ovaries once they are ready or after natural menopause. 

For women considering hysterectomy (removal of the uterus)

Some women with a BRCA1 or BRCA2 mutation may have questions about removing their uterus at the time of risk-reducing salpingo-oophorectomy. We have a section that discusses the pros and cons of surgery for these women. 

If they have a BRCA1 or BRCA2 mutation:

NAVIGATOR: “The decision to remove or keep your uterus at the time of ovary removal is very personal. We have a section on the benefits and risks if you are considering this surgery. Would you like me to go over that information with you?" 

If they have a mutation associated with increased risk of uterine cancer (e.g., Lynch syndrome, STK11, PTEN or TP53):

NAVIGATOR: “The decision to have risk-reducing surgery to remove your uterus is very personal. We have a section on the benefits and risks if you are considering this surgery. Would you like me to go over that information with you?" 

Tips and Script

Breast Reconstruction or Going Flat

• Reconstruction or going flat landing page
• Breast reconstruction options 
• Choosing no reconstruction
• Post-mastectomy photo gallery
• Decision Checklist: Considering Mastectomy with or without Reconstruction
• Tip Sheet: Mastectomy Preparation and Recovery
• Video: 5 Questions About Breast Reconstruction: What Everyone Wants to Know
• Video: Breast Reconstruction Overview
• Video: Breast Reconstruction Q & A Panel
• Video: Going Flat After Mastectomy
• Video: What You Should Know about Breast Implants 
• Book: The Complete Guide to Breast Reconstruction
• Support Meetings: Mastectomy Prep & Recovery
• Insurance & paying for care
• Women’s Health & Cancer Rights Act

 Tips for Peer Navigators  

• People interested in having a mastectomy want to know what options they have for reconstruction and paying for care, as well as expectations for outcomes and seeing photographs. They may want to hear about your decisions and learn how you made them. Recommend our videos: 5 Questions About Breast Reconstruction: What Everyone Wants to Know, Breast Reconstruction Overview and Breast Reconstruction Q & A Panel, Going Flat After Mastectomy and What You Should Know about Breast Implants; the post-mastectomy photo gallery and The Breast Reconstruction Guidebook.
• For people making decisions, our Personalized Checklists & Tip Sheets Wizard includes our Decision Checklist: Considering Mastectomy with or without Reconstruction and our Tip Sheet: Mastectomy Preparation and Recovery. These two resources can help people ask the right questions of their healthcare team and prepare for surgery. 
• Some women may choose not to have reconstruction.  You can see photos of women who chose no reconstruction in the post-mastectomy photo gallery. 
• If an individual is experiencing insurance issues regarding reconstruction costs, note that under the Women’s Health & Cancer Rights Act, most private/group health plans are required to pay for breast reconstruction if the insurer pays for the mastectomy—regardless of a cancer diagnosis. 

Suggested Script

NAVIGATOR: "Choosing mastectomy and making decisions about reconstruction or going flat is a very personal choice. FORCE has resources to help you. Have you decided on whether or not you will have reconstruction?" 

 If they have not yet decided if they will have reconstruction or go flat: 

NAVIGATOR: “If you’re trying to choose between reconstruction or going flat after mastectomy, FORCE has information and photos on both options to help you with your decision-making process. Our Decision Checklist: Considering Mastectomy with or without Reconstruction has a dedicated section with questions for your doctor to help you decide between these two options. I can share with you how to use the checklist to create a personalized list of questions. 

 If they have already decided to go flat: 

NAVIGATOR: “If you have decided to go flat after mastectomy, FORCE has information, videos and photos on our website for people who want information on going flat. I can go over these sections with you."

 If they have already decided to have reconstruction, but haven't decided which type to have:

NAVIGATOR: “If you’re considering breast reconstruction after mastectomy, FORCE has information on a variety of reconstruction options. Reconstruction is a personal and challenging decision. Each procedure has advantages and disadvantages, and no one method of reconstruction is perfect for everyone. We also recommend the book, the Complete Guide to Reconstruction.”

NAVIGATOR: “I'm going to send you information about breast implants, tissue flaps, nipple reconstruction, nipple and areola tattooing, insurance coverage, surgical drains, surgical risks and post-mastectomy and reconstruction photos, so that you can review it at your convenience and make informed decisions with your family and doctors.”

NAVIGATOR: “Because many women are concerned about how they will look after mastectomy with or without reconstruction, FORCE makes photos available via our post-mastectomy photo gallery.”

NAVIGATOR: “If you plan to have reconstruction, you’ll need to select both a breast surgeon for the mastectomy and a plastic surgeon for the reconstruction. If you plan to have reconstruction at the time of your mastectomy, the two surgeons must work together at the same hospital. If you would like suggestions for surgeons, take a look at FORCE's surgeon referral tool to see a list of surgeons who other members have used.”

NAVIGATOR: “Would you like to know more about a particular surgery?”

NAVIGATOR: “Our tip sheet: Mastectomy Preparation and Recovery can be found on our Personalized Checklists & Tip Sheets page. It is full of helpful hints from experts and the community on ways to get ready for surgery. Would you like me to go over how to use it?”

NAVIGATOR: “FORCE now offers dedicated support meetings on the topic of mastectomy preparation and recovery. Would you like me to tell you when the next meeting is?”

Tips and Script

Links to Risk Management Guidelines & Decision-Making

• Care for transgender and nonbinary people: general information page
• Care for transmasculine people with inherited cancer risk
• Care for transfeminine people with inherited cancer risk
• Risk & risk management guidelines by gene mutation
• Screening & risk reduction guidelines by cancer type
• Webinar: Screening, Prevention and Gender-Affirming Care for Transgender People with Mutations
• Blog: Why Gender Matters in Breast Cancer Care

Links to Support & Stories from Members

• Blog: Lynch Syndrome, and ATM Mutation and Issues of Gender Identity and Fertility Access
• Blog: Volunteer Spotlight – Will and Maddie
• Video: Scarlett Shiloh for Transgender Awareness Week 
• LGBTQIA+ Support Meeting Calendar

Tips for Peer Navigators

• People interested in this topic may be:transgender, nonbinary and other gender-diverse individuals:
  • with a personal or family history of cancer who would like to know more about genetic testing in order to understand their risk for cancer and make medical decisions.  
  • with a known mutation who are trying to understand their cancer risk.
  • with a known mutation who are trying to make decisions about gender-affirming care and are looking for information on the effects on cancer risk.
  • with a known mutation who are trying to make decisions about risk-management options.
  • looking for transinclusive support or resources specific to their situation. 
• relatives, caretakers or loved ones trying to help or support a transgender, nonbinary or gender-diverse individual. 

Transgender Care Overview

National guidelines are developed by experts to guide the care of people who are at high risk for cancer due to an inherited mutation. These guidelines are based on the latest research. 

• Because not much research has been done specifically on high-risk transgender people, the evidence may not be as strong as for other high-risk groups. 
• Very few medical centers have combined expertise in both hereditary cancer care and transgender care. 
• In some states, transgender people have restrictions on where they can receive care, the types of care they can receive and whether or not their insurance will pay for care. 

All of these things can present additional challenges for transgender, high-risk individuals. It can be helpful to understand their situation in order to direct them to appropriate information and resources. 

Other resources for transgender cancer care

• National LGBT Cancer Network page on transgender cancer care
  Our partners at the National LGBT Cancer Network have resources, support and information specifically for transgender and nonbinary people. 
• University of California San Francisco Guidelines for Primary and Gender-Affirming Care of Transgender and Gender Nonbinary People
  This set of expert guidelines includes sections on cancer screening for many different cancers. Although not specifically for high-risk people, there information is evidence-based and updated regularly. 
• NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate section on Breast, Ovarian, Uterine and Prostate Cancer Risk Reduction Strategies for Transgender, Non-binary, and Gender Diverse People with Hereditary Cancer Syndromes (requires a free log in to access it)
  • NCCN has guidelines for management of high-risk transgender individuals. Accessing this information requires creating a profile (which is free). The information is developed for healthcare professionals, so it is full of jargon. Despite this, it is a good resource for high-risk transgender individuals to provide to their healthcare providers. Once you log in and access the guidelines, the recommendations for transgender, nonbinary and gender-diverse individuals are on page 64. 

Information and Resources Specifically for Transgender, Nonbinary and Gender Diverse People

Cancer risks vary by gene. Some of the cancer risks and risk management guidelines are similar regardless of an individual's gender. For this reason, it's important for transgender, nonbinary and other gender diverse individuals to know their gene mutation and related guidelines (see the section below on risk and risk-management guidelines by gene mutation and cancer).

The cancers where risk and risk-management options may vary include breast cancer and cancers related to the reproductive system. A list of relevant cancers and related genes can be found on this page:

Care for transgender and nonbinary people general information page 

Note that this is not a complete list of cancer risks, and individuals should consult their healthcare team for additional guidance depending on their gene, family history and personal situation. 

Transgender men, nonbinary and other gender diverse individuals assigned female at birth

Care for transmasculine people with inherited cancer risk

This link discusses many of the considerations for transgender men, including:

• chest screening guidelines
• information about top surgery, how traditional top surgery differs from risk-reducing mastectomy and available options
• information about risk-reducing gynecologic surgery 
• information about gender-affirming hormone care

Transgender women, nonbinary and other gender diverse individuals assigned male at birth

Care for transfeminine people with inherited cancer risk

This link discusses many of the considerations for transgender women, including:

• breast cancer screening guidelines
• prostate cancer screening guidelines 
• information about gender-affirming hormone care

Additional trans-inclusive support and resources

Transgender, nonbinary and other gender-diverse high-risk individuals may benefit from knowing they are not alone. You may want to direct them to our Trans-inclusive LGBTQIA+ Support Meeting Calendar. Additionally, feel free to share our videos, blogs and XRAY reviews related to experiences of the LGBT+ community. Our partners at the National LGBT Cancer Network hold support meetings for people from the LGBT+ community who have been diagnosed with cancer. 

Risk and Management Guidelines by Gene and Cancer

It's important for people to know the risks and guidelines for their gene as outlined below. However, the gene by gene guidelines were largely developed based on research on cisgender individuals, so transgender individuals should also refer to the considerations outlined on the pages above. 

Many cancer centers may have full-service cancer screening and prevention programs that include monitoring by oncologists for individuals who are at high risk for breast and/or ovarian cancer. Very few of these centers also have experts in transgender care. Individuals may want to research the different programs that exist in their area.

Remember that an individual’s current health and non-health reasons (such as age, marital status, parental status, health insurance, employment, financial situation or whether they have experienced family members get sick or die from cancer) may also influence their decision-making process to manage cancer risk.

Risk & Risk Management Guidelines by Gene Mutation

• It’s important, when possible, to find out their gene mutation. This section lists the different guidelines for risk management for each gene mutation for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53.
• National guidelines for managing cancer risk are not available for all gene mutations or the cancers associated with them. However, clinical trials may be available for some cancers or genes.

• Once they click on their gene, they need to scroll down to “Cancer Risk” to see the different types of cancer and the levels of risk for each gene.

• For risk management guidelines they need to scroll down to Tab 2 “Risk Management Options” to see the risk management guidelines for that specific gene.

• There are different risks and guidelines for different genes, even if they cause the same types of cancer. For example, mutations in both BRCA1 and CHEK2 increase breast cancer risk, but the guidelines for breast cancer risk management are different. The five genes associated with Lynch syndrome have different risks for cancer. For example, mutations in the Lynch syndrome genes MLH1 and PMS2 both cause colorectal and endometrial cancers. However, guidelines for risk management are different between the two genes.

Screening & Risk Reduction Guidelines by Cancer Type 

• This is where they can find information on specific screening and risk management options for each of these cancers: breast, colorectal, endometrial, fallopian tube, ovarian and primary peritoneal, melanoma, pancreatic and prostate.  
• Remember that access to care varies from city to city; rural areas generally have fewer options than metropolitan areas and they may have to travel a distance for coordinated care.

Suggested Script

NAVIGATOR: “There are national guidelines that include information on risk and risk-management based on your family history of cancer or a genetic test result. Different gene mutations are associated with different cancer risks. It’s important to speak with a genetics expert to understand your level of risk in order to make informed decisions about your risk management options, including surgery. Have you seen a genetics expert to understand your risk for cancer?" 

If the peer says "no":

NAVIGATOR: “Would you like me to help you find a genetic counselor who can help you understand your cancer risk?" 

If the peer says "yes":

Direct them to the information page on genetic counseling and the lookup tool for the National Society of Genetic Counselors to help them find a counselor in their area.

NAVIGATOR: "Has your doctor gone over your risk management options with you?”

If the peer says "no":

Make sure that they receive the risk management topic and a link to risk management recommendations for people with their mutation.

NAVIGATOR: "Are you receiving gender-affirming care from a team that is knowledgeable about hereditary cancer risk? Are you receiving cancer care from a team that is knowledgeable about considerations for transgender people?"

If the peer says "no" 

You can use the National LGBT Cancer Network Provider Database to try to find a cancer center that provides inclusive care. Note that very few facilities offer expertise in both cancer genetics and gender-affirming care under the same roof.

You may also direct them to the NCCN Guidelines NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate, to the section on "Breast, Ovarian, Uterine and Prostate Cancer Risk Reduction Strategies for Transgender, Non-binary, and Gender Diverse People with Hereditary Cancer Syndromes." These guidelines require (free) registration and are pretty technical, but they can share the link with their healthcare team for more guidance. The guidelines related to transgender high-risk individuals start on page 64.  

NAVIGATOR: “You may want to consult our message boards to see if any members have recommendations for a knowledgeable providers in your area.”

For transmasculine, nonbinary or other gender-diverse individuals assigned female at birth

You can direct them to our page on Care for transmasculine people with inherited cancer risk

Some specific topics you may want to ask them about:

NAVIGATOR: “Are you trying to make decisions about chest screening?”

NAVIGATOR: “Chest screening for high-risk transgender men is different from screening for high-risk cisgender men or women. Would you like to know more about what the guidelines say?”

If the peer says "yes"

You can go over the sections on chest screening. There are two sections, one on screening for transmen who have not had any type of top surgery or mastectomy and another section specific to screening after surgery. 

 NAVIGATOR: “Are you trying to make decisions about top surgery or mastectomy?”

If the peer says "yes"

Discuss the sections on top surgery. It's important for high-risk transgender men considering top surgery to understand the differences between traditional top surgery and risk-reducing mastectomy in order to make a decision that is right for them. 

NAVIGATOR: “Are you trying to make decisions about bottom surgery or risk-reducing gynecologic surgery?”

If the peer says "yes"

NAVIGATOR: “There are no great screening options for ovarian and fallopian tube cancers. For this reason, experts recommend some people at high risk for these cancers remove their ovaries and tubes after child-bearing is complete. Recommendations and ages for surgery vary by gene mutation.”

You can go over the sections on risk-reducing gynecologic surgery. For transgender men who are at high risk for gynecologic cancer and who are also considering bottom surgery, it may be possible for them to coordinate the surgeries at the same time. 

NAVIGATOR: “Are you considering or taking gender-affirming hormones and would like to know their effects on cancer risk?”

If the peer says "yes"

You can go over the sections on gender-affirming hormones and breast and gynecologic cancer risks. 

NAVIGATOR: “I know that these are very personal and difficult decision and one that should be discussed with your doctors and possibly with trusted friends and relatives. Remember what may have worked for one person may or may not be the right option for you. We are all individuals, and the best decision(s) you can make will be based on your own personal situation.”

For transfeminine, nonbinary or other gender diverse individuals assigned male at birth

You can direct them to our page on Care for transfeminine people with inherited cancer risk.

Some specific topics you may want to ask them about:

NAVIGATOR: “Are you trying to make decisions about breast screening?”

NAVIGATOR: “Breast screening for high-risk transgender women is different from screening for high-risk cisgender men or women. Would you like to know more about what the guidelines say?”

If the peer says "yes"

You can go over the sections on breast cancer risk and screening. The risks vary by gene, and some genes have been specifically linked to increased risk for people assigned male at birth. 

NAVIGATOR: “Are you considering or taking gender-affirming hormones and would like to know their effects on cancer risk?”

If the peer says "yes"

You can go over the sections on gender-affirming hormones and breast cancer risks. 

NAVIGATOR: “Are you interested in knowing more about prostate cancer risk and risk-management options?”

If the peer says "yes"

You can go over the sections on prostate cancer risk management for transgender women. 

For transgender, nonbinary and gender-diverse individuals looking for trans-inclusive support or other resources

If they are looking for support from other transgender high-risk individuals, direct them to our LGBTQIA+ Support Meeting Calendar. You can also direct them to the support meetings for our partners at the National LGBT Cancer Network. Refer to the PNP Support Pathway for other considerations. 

Before you close, check in to see if they need any additional resources or information. 

Tips and Script

Paying for Screening or Risk Reduction

• Cancer screenings
• Medication to reduce cancer risk
• Risk-reducing surgeries
• Breast reconstruction or prostheses
• Health insurance appeals
• Women’s Health & Cancer Rights Act
• Patient Advocate Foundation 
• Triage Cancer

Tips for Peer Navigators 

• FORCE is unable to provide financial support for cancer screening, medications or surgery.  
• Most insurers will “cover” screenings, medications and surgeries that are recommended by national medical guidelines, but coverage does not mean 100% payment. Deductibles, coinsurance and copays typically apply to all but the most basic screenings (mammograms starting at age 40 and colonoscopies starting at age 50); coverage for breast MRIs can be problematic and sometimes result in large out-of-pocket costs for the patient.
• Specific to risk-reducing mastectomy, the majority of major health plans cover prophylactic surgeries for high-risk women. However, many insurers initially deny coverage because the appropriate documentation has not been provided. A healthcare provider may need to write a supportive letter explaining the patient’s high-risk status to appeal the decision. Also, some insurers have outdated policies that only mention coverage of prophylactic surgery for women with BRCA mutations. Appealing may be necessary for women with other mutations, such as ATM, PALB2, etc. Note that Medicare’s policy only covers surgery for people diagnosed with cancer. It doesn’t officially cover preventive surgeries, but some previvors manage to get coverage.
• If an individual does not have insurance, it may be difficult to manage the costs of risk-reducing surgery. Limited financial assistance may be available. This information can be found on the “Financial Assistance” tab in the “Risk-Reducing Surgeries” section under “Insurance & Paying for Care” on our website.
• Individuals may appeal an insurer’s reimbursement or decision to deny coverage of screening, medication or risk-reducing surgery. We have created sample appeal letters in the “Health Insurance Appeals” section of our website. When the link to the appeal letter is clicked, it automatically downloads the Word file that the individual can personalize for their situation. 

Suggested Scripts    

NAVIGATOR: “I see that you would like information about paying for preventive screening, medication or surgery. Did you know that national guidelines outline the standard of care for some individuals, and this can affect how insurance companies cover the cost of many screenings, medicines and surgeries? I will send you information on the guidelines so that you can review how they apply to your circumstances. Would you like to discuss specific information about these guidelines?” [Refer to the appropriate section under Insurance & Paying for Care for specifics.]

NAVIGATOR: “Do you need information about filing an appeal with your health insurer in response to a denial of coverage or low reimbursement for your screening or surgery? You may want to look at the Health Insurance Appeals section on our website. It contains template insurance appeal letters that you can download and personalize to help you appeal your insurer. I will send you the link.”

NAVIGATOR: “Did you know that most hospitals have social workers, nurse navigators or financial assistance counselors who can help? They can explain options and direct you to resources that provide assistance in paying for medical care.” [If they don’t have access to this, you can refer to the Patient Advocate Foundation and Triage Cancer, two great resources for helping people find financial assistance and health insurance to pay for care.

If the peer has questions about their insurance coverage and info is not available on the website, ask:

NAVIGATOR: “Are you open to my collecting additional information so that we can research your situation and identify possible resources to help you?"

If peer says yes, gather and send the following information to [email protected]:

• Individual’s name and email address  
• Explanation of their situation and what help is needed  
• Type of insurance (or none)  
• Whether or not they received genetic counseling  
• State where they reside

Tips and Script

Breast Cancer Treatment 

• Breast cancer treatment landing page
• Breast cancer stages & subtypes 
• Genetic testing for people with breast cancer 
• Treatment listed by gene mutation
• Inherited mutations linked to breast cancer 
• Standard treatment for breast cancer 
• Biomarker testing to guide treatment
• Targeted therapy & immunotherapies
• PARP inhibitors
• Decision Checklist: Considering Mastectomy with or without Reconstruction
• Video: Ask the Experts: Breast Cancer Genetics
  • Specific section on breast cancer treatment 
• Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me?
• Video: Biomarkers and Liquid Biopsies
• Treatment listed by treatment type 
• Research & media coverage of breast cancer

Tips for Peer Navigators

• Individuals who select this topic may:
  • be newly diagnosed with breast cancer
  • be trying to decide between mastectomy or lumpectomy and radiation for treating their cancer
  • be diagnosed with advanced breast cancer that has stopped responding to treatment or has progressed
  • be newly diagnosed with breast cancer recurrence  
  • currently be in treatment for breast cancer
  • or may not have had testing for BRCA or another gene linked to breast cancer
  • be a caregiver who wants to learn more  
• If they are interested in obtaining support, a better understanding of available cancer treatments and how genetic testing or an inherited mutation may affect their decision-making, FORCE's website provides information on cancer stages and types, reasons to have genetic counseling and testing, treatment options and help finding specialists.
• You can mention that comprehensive cancer centers provide second opinions. Two great resources are NCCN and the National Cancer Institute.

Information for people with breast cancer: Genetic testing

• Genetic testing may affect their treatment options, medical outcomes and risk for another cancer. All people with ovarian cancer meet national guidelines for genetic counseling and testing. They can learn more about genetic testing cancer here: Genetic testing for people with breast cancer.
  • People should be encouraged to meet with a genetic counselor if they have not already done so to better understand how an inherited mutation may affect their treatment plan. 
  • If they have already had genetic testing, you may also direct them to specific information about their gene mutation (see below)

Helping people with a known mutation find information on their gene

• Treatment listed by gene mutation
  NOTE: This link has specific information on cancer treatment (where available) for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53. Some (but not all) inherited mutations may have specific treatments or other considerations that may relate to that specific mutation. Not all mutations have specific treatment considerations.

Once they click on their gene, they need to scroll down to the box with “Cancer Treatment” to see the treatment information for that specific gene.

Information for people newly diagnosed: Staging

• Once cancer has been diagnosed, a series of tests are usually performed to determine if the cancer has spread and to identify the subtype of cancer. A treatment plan can be developed based on these results.  More information can be found here: Breast cancer stages & subtypes  
  • The stage of a cancer refers to the size of the cancer and whether the cancer has spread within and beyond the organ.
  • The subtype refers to characteristics of the cancer cells and the presence or absence of biomarkers.

Standard therapy for breast cancer

• Treatments for cancer include chemotherapy, surgery, radiation, hormonal therapy, immunotherapy and targeted therapy. More can be found in these three sections: Standard treatment for breast cancer
  • This section has brief information on chemotherapy, radiation and surgery for breast cancer.

Surgery for breast cancer: Choosing between lumpectomy with radiation or mastectomy

• Breast cancer treatment involves surgery to remove the cancer. Some women will be given the option of mastectomy or lumpectomy with radiation. Our Decision Checklist: Considering Mastectomy with or without Reconstruction has a section with questions to ask a breast surgeon to help decisions between mastectomy and lumpectomy with radiation. 

Information for people with breast cancer: Biomarker testing    

• Biomarker testing usually refers to tests performed on a tumor to see which targeted therapies or immunotherapies are most likely to work best. In ovarian cancer, biomarker testing is often important for helping doctors select the next treatment. Biomarker test results may help identify people eligible for certain clinical trials.
• More information can be found here: Biomarker testing to guide treatment
• More information about these specific biomarkers that are common in people with inherited mutations can be found here: DNA Damage Repair and Cancer Treatment.
• They may also want to view this following video: Video: Biomarkers and Liquid Biopsies

Information on targeted therapies and immunotherapies

• Breast cancer: targeted therapies and immunotherapies
•  This section has information on these treatments for breast cancer, including information on PARP inhibitors and immunotherapies for treating early-stage and late stage breast cancer. They will also find clinical trial links for these therapies on the right side of the page. 
• They may also want to view these more general videos, including: 
  • Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me? (from 2024)
  • Video: Ask the Experts: Breast Cancer Genetics
    • Specific section on breast cancer treatment 
  • Video: What are Targeted Therapies and Immunotherapies? (from 2021)
  • Video: Targeted Therapies and Immunotherapies Q & A Panel (from 2021)

More about treatments and side effects

• Treatment listed by treatment type 
• This section has information on the following types of treatment: chemotherapy, targeted therapies, a section specifically on PARP inhibitors, immunotherapies, radiation, surgery and a section on biomarker testing for selecting cancer treatments.

Once they click on their gene, they need to scroll down to the box with “Cancer Treatment” to see the treatment information for that specific gene.

Information for people who are newly diagnosed, in treatment or experiencing a recurrence or progression: Clinical trials and research

• Clinical trials are an option for all people with breast cancer, even those who are newly diagnosed.
• Here is a link to our Search and Enroll Tool and studies specifically for people diagnosed with breast cancer.
• There may also be studies open for people whose cancer has progressed after PARP inhibitors. If this is their situation you may want to call their attention to this fact.   
• Research & media coverage of breast cancer: Mention our XRAY program (where we evaluate research on cancer topics) and point them to the link on articles on breast cancer.     

Suggested Script 

NAVIGATOR: “I see you’re interested in learning more about breast cancer treatments. Our website information includes information on standard of care based on national guidelines. Consult with your physician to discuss care that addresses your personal situation. After this call, I'm going to send you all the information I have on this topic. It explains all of your options. Is there anything specific that you would like to discuss? We have information on:

• the types and stages of breast cancer
• types and side effects of different treatments 
• reasons why someone with breast cancer might want to consider genetic counseling and/or testing and how to find a genetics expert
• specific information on treatment based on gene mutation
• biomarkers, targeted therapy and immunotherapy
• deciding between a lumpectomy and mastectomy
• types of mastectomy and reconstruction
• finding a breast surgeon and/or reconstructive surgeon
• clinical trials and research”

NAVIGATOR: “Would you like to review any of these issues now?” 

NAVIGATOR: “Has anyone mentioned genetic counseling and testing to you?” 

If yes to testing, find out if they know their gene mutation and see if there is treatment information specific to that gene:

NAVIGATOR: “There may be specific guidelines for treating cancer with certain gene mutations. Would you like me to go over any information specific to your mutation?"

If no to testing, find out if they have been referred to a genetic counselor. 

NAVIGATOR: “Expert guidelines recommend genetic counseling and testing for some people with breast cancer. Would you like me to help you find a genetic counselor who can talk to you about genetic testing and guide you through the process?" 

NAVIGATOR: "Has your surgeon given you a choice of types of surgery? Do you need resources to help you make a decision between lumpectomy with radiation or mastectomy? If so, our Decision Checklist: Considering Mastectomy with or without Reconstruction has a section with questions to ask a breast surgeon to help decisions between mastectomy and lumpectomy with radiation.  

NAVIGATOR: “Selecting cancer treatment is a very personal decision and one that should be made with your healthcare team.”

NAVIGATOR: “Have you considered obtaining a second opinion? Most insurance companies will pay for a second opinion from another facility. Gathering more information and obtaining another perspective about your diagnosis and treatment options may help you feel more comfortable and confident about the healthcare decisions you make. It's also important to seek an opinion from a doctor who specializes in breast oncology.” 

NAVIGATOR: “Patients at all stages of cancer, even those who are newly diagnosed, may be eligible for clinical trials. Are you interested in seeking treatment through a clinical trial?  I can provide resources for participating in research.”

NAVIGATOR: “Do you have any questions for me?” 

Tips and Script

Colorectal Cancer Treatment

• Colorectal cancer treatment landing page
• Colorectal cancer stages & subtypes 
• Genetic testing for people with colorectal cancer 
• Treatment listed by gene mutation
• Inherited mutations linked to colorectal cancer 
• Standard treatment for colorectal cancer
• Biomarkers for treatment selection
• Targeted therapy & immunotherapy
• Video: Experts Discuss Hereditary Gastrointestinal Cancer Risk, Screening, Prevention and Treatment
  • Direct link to section on cancer treatment
• Video: Spotlight on Hereditary Cancer Research
• Video: What's New for Colorectal Cancer Treatment? 
• Video: Biomarkers and Liquid Biopsies
• Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me?
• Treatment listed by treatment type
• XRAY reviews of research related to colorectal cancer treatment

Tips for Peer Navigators

• Individuals who select this topic may:
  • be newly diagnosed with colorectal cancer 
  • be diagnosed with advanced colorectal cancer that has stopped responding to treatment or has progressed
  • be diagnosed with colorectal cancer recurrence  
  • currently be in treatment for colorectal cancer
  • be a caregiver who wants to learn more  
  • or may not have had testing for a Lynch syndrome mutation or another gene linked to colorectal cancer
  • have received tumor test results which suggested they have an inherited mutation and want to know more about genetic counseling or testing
• If they are interested in obtaining support, a better understanding of available cancer treatments and how genetic testing or an inherited mutation may affect their decision-making, FORCE's website provides information on cancer stages and types, reasons to have genetic counseling and testing, treatment options and help finding specialists.
• You can mention that comprehensive cancer centers provide second opinions. Two great resources are NCCN and the National Cancer Institute.
• If they are looking for information and resources specific to colorectal cancer treatment, you can refer them to our partners at the Colorectal Cancer Alliance and Fight Colorectal Cancer. 
• Genetic testing for people with colorectal cancer 
  Genetic testing may affect their treatment options, medical outcomes and risk for another cancer. People should be encouraged to meet with a genetic counselor if they have not already done so to better understand how an inherited mutation may affect their treatment plan or risk/risk management for future cancers. 

Helping people with a known mutation find information on their gene

Treatment listed by gene mutation
If they already had genetic testing and have an inherited mutation, you can also direct them to the treatment section of their gene mutation.
NOTE: This link has specific information on cancer treatment (where available) for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53. Some (but not all) inherited mutations may have specific treatments or other considerations that may relate to that specific mutation. Not all mutations have specific treatment considerations.

Once they click on their gene, they need to scroll down to the box with “Cancer Treatment” to see the treatment information for that specific gene.

Information for people newly diagnosed: Staging

• Once cancer has been diagnosed, a series of tests are usually performed to determine if the cancer has spread and to identify the subtype of cancer. A treatment plan can be developed based on these results.  More information can be found here: Colorectal cancer stages & subtypes.
  • The stage of a cancer refers to the size of the cancer and whether the cancer has spread within and beyond the organ.
  • The subtype refers to characteristics of the cancer cells and the presence or absence of biomarkers.

Information for people with Lynch syndrome making surgical decisions

• People who have Lynch syndrome and a colorectal cancer diagnosis who are making decisions about surgery, may benefit from viewing this webinar: Surgical Considerations for People with Lynch Syndrome-related Gastrointestinal Cancers.

Information for people who are newly diagnosed, have had a progression or recurrence: Biomarker testing  

• Biomarker testing usually refers to tests performed on a tumor to see which targeted therapies or immunotherapies are most likely to work best. In colorectal cancer, tumors should be checked for a biomarker known as MSI-High or dMMR. 
• Results can help the doctor select the next treatment and may make people eligible for certain clinical trials.
• More information can be found here:  Colorectal Cancer: Biomarker Testing.
• There is also a more general section on biomarker testing that provides more detail about biomarkers that are common in people with inherited mutations: DNA Damage Repair and Cancer Treatment

Information on targeted therapies and immunotherapies

•  This section has information on these topics specific to colorectal cancer. They will also find clinical trial links for these therapies on the right side of the page. 
• More information can be found here:  Colorectal Cancer: Targeted and Immunotherapy.
• They may also want to view this video: Video: What's New for Colorectal Cancer Treatment? (from 2022)
• They may also want to view these more general videos, including: 
  • Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me? (from 2024)
  • Video: What are Targeted Therapies and Immunotherapies? (from 2021)
  • Video: Targeted Therapies and Immunotherapies Q & A Panel (from 2021)

Information for people in treatment: Managing treatment side effects

• Treatment listed by treatment type
  This section has information on cancer treatment for the following types of treatment: chemotherapy, targeted therapies, immunotherapies, surgery, radiation and a section on biomarkers that includes information about testing for MSI-High and MMR-D, biomarkers often found in people with Lynch syndrome.

This section is also where they can find information on side effects and how to manage them for each type of treatment 

Information for people who are newly diagnosed, in treatment or experiencing a recurrence or progression: Clinical trials and research

• Clinical trials are an option for people with colorectal cancer, even those who are newly diagnosed.  
• Here is a link to our Search and Enroll Tool and studies specifically for people diagnosed with colorectal cancer.
• They can also our quick search to look up treatment studies by gene mutation and our in-depth search to search for studies on clinicaltrials.gov. 
• XRAY reviews of research related to colorectal cancer treatment: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link on articles on colorectal cancer.  

Suggested Script 

NAVIGATOR: “I see you’re interested in learning more about colorectal cancer treatments. Our website includes information on standard of care based on national guidelines. Consult with your physician to discuss care that addresses your personal situation. After this call, I'm going to send you all the information I have on this topic. It explains all of your options. Is there anything specific that you would like to discuss? We have information on:

• the types and stages of colorectal cancer
• the types and side effects of different treatments 
• the reasons why someone with colorectal cancer might want to consider genetic counseling and/or testing and how to find a genetics expert
• specific information on treatment based on gene mutation
• biomarkers, targeted therapy and immunotherapy and their side effects
• clinical trials and research”

NAVIGATOR: “Would you like to review any of these issues now?” 

NAVIGATOR: “Has anyone mentioned genetic counseling and testing to you?” 

If yes to testing, find out if they know their gene mutation and see if there is treatment information specific to that gene:

NAVIGATOR: “There may be specific guidelines for treating cancer with certain gene mutations. Would you like me to go over any information specific to your mutation?"

If no to testing, find out if they have been referred to a genetic counselor. 

NAVIGATOR: “Would you like me to help you find a genetic counselor who can talk to you about genetic testing and guide you through the process?" 

NAVIGATOR: “Experts recommend all colorectal cancers be tested for an abnormality called Mismatch Repair Deficiency (MMR-D). Another name for this is “Microsatellite Instability” or “MSI-High." Has your doctor mentioned testing your cancer for microsatellite instability or mismatch repair deficiency?" 

If no, or I'm not sure:

NAVIGATOR: “You may want to ask your doctor if this test was done and ask for results. Some results may open up different treatment options for you. Some results may mean that you might benefit from genetic counseling or testing for an inherited mutation associated with Lynch syndrome."

NAVIGATOR: “Selecting cancer treatment is a very personal decision and one that should be made with your healthcare team.”

NAVIGATOR: “Have you considered obtaining a second opinion? Most insurance companies will pay for a second opinion from another facility. Gathering more information and obtaining another perspective about your diagnosis and treatment options may help you feel more comfortable and confident about the healthcare decisions you make.”

NAVIGATOR: "If you need more information on biomarker testing, immunotherapies and targeted therapies, you can visit our website or watch our videos that explain these tests in more detail. 

NAVIGATOR: "You may want to watch the video Spotlight on Hereditary Cancer Research from our 2024 conference. There are updates on colorectal cancer treatment within that presentation. If you have Lynch syndrome, you may also want to watch the video "What's New in Hereditary Cancer - Lynch Syndrome."

NAVIGATOR: “Patients at all stages of cancer, even those who are newly diagnosed, may be eligible for clinical trials. Are you interested in seeking treatment through a clinical trial?  I can provide resources for participating in research.”

NAVIGATOR: “Do you have any questions for me?” 

Tips and Script

Endometrial Cancer Treatment

• Endometrial cancer treatment landing page
• Endometrial cancer stages and subtypes
• Endometrial cancer treatment
• Genetic testing for people with endometrial cancer 
• Treatment listed by gene mutation
• Inherited mutations linked to endometrial cancer  
• Biomarker testing for treatment selection
• Targeted therapy & immunotherapy
• Treatment listed by treatment type
• Video: What's New in Endometrial Cancer Treatment?
• Video: Biomarkers and Liquid Biopsies
• Video: What are Targeted Therapies and Immunotherapies?
• Treatment studies enrolling people diagnosed with endometrial cancer
• XRAY reviews of research related to endometrial cancer treatment

Tips for Peer Navigators

• Individuals who select this topic may:
  • be newly diagnosed with endometrial cancer 
  • be diagnosed with advanced endometrial cancer that has stopped responding to treatment or has progressed
  • be diagnosed with endometrial cancer recurrence  
  • currently be in treatment for endometrial cancer
  • be a caregiver who wants to learn more  
  • or may not have had testing for a Lynch syndrome mutation or another gene linked to endometrial cancer
  • have received tumor test results which suggested they have an inherited mutation and want to know more about genetic counseling or testing
• If they are interested in obtaining support, a better understanding of available cancer treatments and how genetic testing or an inherited mutation may affect their decision-making, FORCE's website provides information on cancer stages and types, reasons to have genetic counseling and testing, treatment options and help finding specialists.
• You can mention that comprehensive cancer centers provide second opinions. Two great resources are NCCN and the National Cancer Institute.
• Genetic testing may affect their treatment options, medical outcomes and risk for another cancer.
  • People should be encouraged to meet with a genetic counselor if they have not already done so to better understand how an inherited mutation may affect their treatment plan or risk/risk management for future cancers. 
  • If they have already had genetic testing, you may also direct them to specific information about their gene mutation.

Helping people with a known mutation find information on their gene

• Treatment listed by gene mutation
  If they already had genetic testing and have an inherited mutation, you can also direct them to the treatment section of their gene mutation.
  NOTE: This link has specific information on cancer treatment (where available) for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53. Some (but not all) inherited mutations may have specific treatments or other considerations that may relate to that specific mutation. Not all mutations have specific treatment considerations.

Once they click on their gene, they need to scroll down to the box with “Cancer Treatment” to see the treatment information for that specific gene.

Information for people newly diagnosed: Staging

• Once cancer has been diagnosed, a series of tests are usually performed to determine if the cancer has spread and to identify the subtype of cancer. A treatment plan can be developed based on these results.  More information can be found here: Endometrial cancer stages and subtypes..
• The stage of a cancer refers to the size of the cancer and whether the cancer has spread within and beyond the organ.

Information for people who are newly diagnosed, have had a progression or recurrence: Biomarker testing  

• Biomarker testing usually refers to tests performed on a tumor to see which targeted therapies or immunotherapies are most likely to work best. In endometrial cancer, tumors should be checked for a biomarker known as MSI-High or dMMR. 
• Results can help the doctor select the next treatment and may make people eligible for certain clinical trials.
• More information can be found here:  Endometrial Cancer: Biomarker Testing.
• There is also a more general section on biomarker testing that provides more detail about biomarkers that are common in people with inherited mutations: DNA Damage Repair and Cancer Treatment

Information for people with advanced or recurrent cancer: Targeted therapies and immunotherapies

•  This section has information on these topics specific to endometrial cancer. They will also find clinical trial links for these therapies on the right side of the page. 
• More information can be found here:  Endometrial Cancer: Targeted and Immunotherapy.
• They may also want to view this video: Video: What's New in Endometrial Cancer Treatment? This video is from our 2024 conference, so it's up to date.
• They may also want to view these more general videos, including: 
  • Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me? (from 2024)
  • Video: What are Targeted Therapies and Immunotherapies? (from 2021)
  • Video: Targeted Therapies and Immunotherapies Q & A Panel (from 2021)

Information for people in treatment: Managing treatment side effects

• Treatment listed by treatment type 
  This section has information on cancer treatment for the following types of treatment: chemotherapy, targeted therapies, immunotherapies, surgery, radiation and a section on biomarkers that includes information about testing for MSI-High and MMR-D, biomarkers often found in people with Lynch syndrome.

This section is also where they can find information on side effects and how to manage them for each type of treatment. 

This section is also where they can find information on side effects and how to manage them for each type of treatment. 

Information for people who are newly diagnosed, in treatment or experiencing a recurrence or progression: Clinical trials and research

• Clinical trials are an option for people with endometrial cancer, even those who are newly diagnosed.  
• Here is a link to our Search and Enroll Tool and studies specifically for people diagnosed with endometrial cancer.
• They can also our quick search to look up treatment studies by gene mutation and our in-depth search to search for studies on clinicaltrials.gov. 

• XRAY reviews of research on endometrial cancer: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link on articles on prostate cancer.

Suggested Script 

NAVIGATOR: “I see you’re interested in learning more about endometrial cancer treatments. Our website includes information on standard of care based on national guidelines. Consult with your physician to discuss care that addresses your personal situation. After this call, I'm going to send you all the information I have on this topic. It explains all of your options. Is there anything specific that you would like to discuss? We have information on:

• the stages of endometrial cancer
• the types and side effects of different treatments 
• the reasons why someone with endometrial cancer might want to consider genetic counseling and/or testing and how to find a genetics expert
• the specific information on treatment based on gene mutations
• biomarkers, targeted therapy and immunotherapy and their side effects
• clinical trials and research.”

NAVIGATOR: “Would you like to review any of these issues now?” 

NAVIGATOR: “Experts recommend all endometrial cancers be tested for an abnormality called Mismatch Repair Deficiency (dMMR). Another related test looks for “Microsatellite Instability” or “MSI-High." Has your doctor mentioned testing your cancer for microsatellite instability or mismatch repair deficiency?" 

If no, or I'm not sure:

NAVIGATOR: “You may want to ask your doctor if this test was done and ask for results. Some results may open up different treatment options for you. Some results may mean that you might benefit from genetic counseling or testing for an inherited mutation associated with Lynch syndrome."

NAVIGATOR: “Expert guidelines recommend genetic counseling and testing for some people with endometrial cancer. Has anyone mentioned genetic counseling and testing to you?” 

If yes to testing, find out if they know their gene mutation and see if there is treatment information specific to that gene:

NAVIGATOR: “There may be specific guidelines for treating cancer with certain gene mutations. Would you like me to go over any information specific to your mutation?"

If no to testing, find out if they have been referred to a genetic counselor. 

NAVIGATOR: “Would you like me to help you find a genetic counselor who can talk to you about genetic testing and guide you through the process?" 

NAVIGATOR: “Selecting cancer treatment is a very personal decision and one that should be made with your healthcare team.” 

NAVIGATOR: “Have you considered obtaining a second opinion? Most insurance companies will pay for a second opinion from another facility. Gathering more information and obtaining another perspective about your diagnosis and treatment options may help you feel more comfortable and confident about the healthcare decisions you make.”

NAVIGATOR: “Patients at all stages of cancer, even those who are newly diagnosed, may be eligible for clinical trials. Are you interested in seeking treatment through a clinical trial?  I can provide resources for participating in research.”

NAVIGATOR: “Do you have any questions for me?”

Tips and Script

Melanoma Treatment

• Melanoma treatment
• Melanoma stages & subtypes 
• Biomarker and genetic testing for people with melanoma 
• Treatment listed by gene mutation
• Inherited mutations linked to melanoma 
• Biomarkers, targeted therapy and immunotherapy 
• Video: Biomarkers and Liquid Biopsies
• Video: What are Targeted Therapies and Immunotherapies?
• Treatment listed by treatment type

Tips for Peer Navigators

• Individuals who select this topic may:
  • be newly diagnosed with melanoma  
  • be diagnosed with melanoma that has stopped responding to treatment or has progressed
  • be diagnosed with melanoma recurrence  
  • currently be in treatment for melanoma
  • or may not have had testing for BRCA, CDK4, CDKN2A or another gene linked to melanoma
  • have received tumor test results which suggested they have an inherited mutation and want to know more about genetic counseling or testing
  • be a caregiver who wants to learn more
• If they are interested in obtaining support, a better understanding of available cancer treatments and how genetic testing or an inherited mutation may affect their decision-making, FORCE's website provides information on cancer stages and types, reasons to have genetic counseling and testing, treatment options and help finding specialists.
• You can mention that comprehensive cancer centers provide second opinions. Two great resources are NCCN and the National Cancer Institute.
• If they want support specific to their melanoma diagnosis, you may want to refer them to our partners at AIM at Melanoma. 
• Genetic testing may affect their treatment options, medical outcomes and risk for another cancer. If they have already had genetic testing, you may also direct them to specific information about their gene mutation.
• Treatment listed by gene mutation
  NOTE: This link has specific information on cancer treatment (where available) for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53. Some (but not all) inherited mutations may have specific treatments or other considerations that may relate to that specific mutation. Not all mutations have specific treatment considerations.

Once they click on their gene, they need to scroll down to the box with “Cancer Treatment” to see the treatment information for that specific gene.

Information for people newly diagnosed: Staging

• Melanoma stages & subtypes: Once cancer has been diagnosed, a series of tests are usually performed to determine if the cancer has spread and to identify the subtype of cancer. A treatment plan can be developed based on these results. 
• The stage of a cancer refers to the size of the cancer and whether the cancer has spread within and beyond the organ.

Information for people newly diagnosed, in treatment or with a recurrence: Biomarker testing

• Biomarker testing usually refers to tests performed on a tumor to see which targeted therapies or immunotherapies are most likely to work best.
• Results can help the doctor select the next treatment and may make people eligible for certain clinical trials.
• More information can be found here: Biomarker and genetic testing for people with melanoma.  This section has information on these topics specific to melanoma.

Information for people newly diagnosed, in treatment or with a recurrence: Targeted therapies and immunotherapies

• This section has information on these topics specific to melanoma. Immunotherapy in particular is often used to treat melanoma. 
• More information can be found here: Treatment for melanoma.

Information for people in treatment: Treatment listed by treatment type

• Treatment listed by treatment type 
  This section has more general information on the following types of treatment: chemotherapy, targeted therapies, immunotherapy, surgery and radiation and a section on biomarkers that includes information about tumor testing to help guide treatment.
• They may also want to view these webinars for more information: 
  • Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me?
  • Video: What are Targeted Therapies and Immunotherapies?

This section is also where they can find information on side effects and how to manage them for each type of treatment (usually tab #3).

• Clinical trials are an option for all people with melanoma, even those who are newly diagnosed.     

Suggested Script 

NAVIGATOR: “I see you’re interested in learning more about melanoma treatments. Our website includes information on standard of care based on national guidelines. Consult with your physician to discuss care that addresses your personal situation. After this call, I'm going to send you all the information I have on this topic. It explains all of your options. Is there anything specific that you would like to discuss? We have information on:

• the stages of melanoma
• the types and side effects of different treatments 
• the reasons why someone with melanoma might want to consider genetic counseling and/or testing and how to find a genetics expert
• the specific information on treatment based on gene mutations
• biomarkers, targeted therapy and immunotherapy and their side effects. Do you know if your cancer was tested for any biomarkers? Has your doctor mentioned this to you?
• clinical trials and research”

NAVIGATOR: “Would you like to review any of these issues now?” 

NAVIGATOR: “Selecting cancer treatment is a very personal decision and one that should be made with your healthcare team.”

NAVIGATOR: “Have you considered obtaining a second opinion? Most insurance companies will pay for a second opinion from another facility. Gathering more information and obtaining another perspective about your diagnosis and treatment options may help you feel more comfortable and confident about the healthcare decisions you make.”

NAVIGATOR: “Patients at all stages of cancer, even those who are newly diagnosed, may be eligible for clinical trials. Are you interested in seeking treatment through a clinical trial?  I can provide resources for participating in research.”

NAVIGATOR: “Do you have any questions for me?”

Tips and Script

Ovarian, Fallopian Tube & Primary Peritoneal Cancer Treatment

• Ovarian cancer treatment
• Ovarian cancer stages & subtypes 
• Genetic testing for people with ovarian cancer
• Treatment listed by gene mutation
• Inherited mutations linked to ovarian cancer 
• Video: Experts Discuss Hereditary Gynecologic Cancer Risk, Screening, Prevention and Treatment
  • Direct link to section on cancer treatment 
• Maintenance therapy for ovarian cancer
• Biomarker testing in ovarian cancer
• Targeted therapies & immunotherapies
• PARP inhibitors
• Video: Biomarkers and Liquid Biopsies
• Video: What are Targeted Therapies and Immunotherapies? 
• Treatment listed by treatment type  
• XRAY reviews of ovarian cancer research

Tips for Peer Navigators

• Ovarian, fallopian tube and primary peritoneal cancer are all related and treated similarly (collectively we refer to all of these as "ovarian cancer"). Resources referred to in this section are relevant to people diagnosed with any of the three cancer types.
• Individuals who select this topic may:
  • be newly diagnosed with ovarian, fallopian tube or primary peritoneal cancer
  • be diagnosed with advanced ovarian cancer that has stopped responding to treatment or has progressed
  • be diagnosed with ovarian cancer recurrence  
  • currently be in treatment for ovarian cancer
  • be finishing treatment and making decisions about maintenance therapy
  • be a caregiver who wants to learn more
  • or may not have had testing for BRCA, Lynch syndrome or another gene linked to ovarian cancer 
• If they are interested in obtaining support, a better understanding of available cancer treatments and how genetic testing or an inherited mutation may affect their decision-making, FORCE's website provides information on cancer stages and types, reasons to have genetic counseling and testing, treatment options and help finding specialists.
• You can mention that comprehensive cancer centers provide second opinions.  Two great resources are NCCN and the National Cancer Institute.

Information for people with ovarian cancer: Genetic testing

• Genetic testing may affect their treatment options, medical outcomes and risk for another cancer. All people with ovarian cancer meet national guidelines for genetic counseling and testing. They can learn more about genetic testing cancer here: Genetic testing for people with ovarian cancer.
  • People should be encouraged to meet with a genetic counselor if they have not already done so to better understand how an inherited mutation may affect their treatment plan. 
  • If they have already had genetic testing, you may also direct them to specific information about their gene mutation (see below)

Helping people with a known mutation find information on their gene

• Treatment listed by gene mutation
  NOTE: This link has specific information on cancer treatment (where available) for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53. Some (but not all) inherited mutations may have specific treatments or other considerations that may relate to that specific mutation. Not all mutations have specific treatment considerations.

Once they click on their gene, they need to scroll down to the box with “Cancer Treatment” to see the treatment information for that specific gene.

Information for people newly diagnosed: Staging

• Once cancer has been diagnosed, a series of tests are usually performed to determine if the cancer has spread and to identify the subtype of cancer. A treatment plan can be developed based on these results.
• The stage of a cancer refers to the size of the cancer and whether the cancer has spread within and beyond the organ.  
• More information can be found here: Ovarian cancer stages & subtypes.

Standard therapy for ovarian cancer

• Most people with ovarian cancer will receive treatment with surgery and chemotherapy. They can learn more here: Standard treatment for ovarian cancer. 

Information for people with advanced or recurrent cancer: Biomarker testing    

• Biomarker testing usually refers to tests performed on a tumor to see which targeted therapies or immunotherapies are most likely to work best. In ovarian cancer, biomarker testing is often important for helping doctors select the next treatment. Biomarker test results may help identify people eligible for certain clinical trials.
• More information can be found here:  Ovarian Cancer: Biomarker Testing.
• They may qualify for treatment with a PARP inhibitor (especially if they have an inherited or acquired BRCA, PALB2 mutation or a biomarker known as HRD-H). They may qualify for immunotherapy (especially if they have Lynch syndrome or a biomarker known as Microsatellite Instability or MSI-High or Mismatch Repair Deficiency).
• More information about these specific biomarkers that are common in people with inherited mutations can be found here: DNA Damage Repair and Cancer Treatment.

Information on targeted therapies and immunotherapies

• This section has information on these treatments for ovarian cancer, including information on PARP inhibitors. They will also find clinical trial links for these therapies on the right side of the page. 
• More information can be found here: Ovarian cancer: Targeted therapies & immunotherapies
• They may also want to view this video: Video: Experts Discuss Hereditary Gynecologic Cancer Risk, Screening, Prevention and Treatment
• They may also want to view these more general videos, including: 
  • Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me? (from 2024)
  • Video: What are Targeted Therapies and Immunotherapies? (from 2021)
  • Video: Targeted Therapies and Immunotherapies Q & A Panel (from 2021)

Information for people making decisions about maintenance therapy

• After chemotherapy ends, many ovarian cancer patients will be offered the option of maintenance therapy to try to delay the time until the cancer comes back. Maintenance uses one or more targeted or immunotherapy drugs. They can view more here: Maintenance therapy for ovarian cancer.

More about treatments and side effects

• Treatment listed by treatment type 
  This section has general information on the following types of treatment: chemotherapy, targeted therapies, immunotherapies, surgery, radiation and a section on biomarkers that includes information about tumor testing for BRCA, HRD, MSI-High and MMR-D, biomarkers often found in people with inherited mutations.

This section is also where they can find information on side effects and how to manage them for each type of treatment. 

Information for people who are newly diagnosed, in treatment or experiencing a recurrence or progression: Clinical trials and research

• Clinical trials are an option for all people with ovarian cancer, even those who are newly diagnosed. There are a few studies open for people whose cancer has progressed after PARP inhibitors. If this is their situation you may want to call their attention to this fact.   
• Here is a link to our Search and Enroll Tool and studies specifically for people diagnosed with ovarian cancer.
• Mention our XRAY program, where we evaluate research on cancer topics and point them to the link for articles on ovarian cancer: XRAY reviews of ovarian cancer research.

Suggested Script  

NAVIGATOR: “I see you’re interested in learning more about ovarian cancer treatments. Our website includes information on standard of care based on national guidelines. Consult with your physician to discuss care that addresses your personal situation. After this call, I'm going to send you all the information I have on this topic. It explains all of your options. Is there anything specific that you would like to discuss? We have information on:

• the stages of ovarian cancer
• the types and side effects of different treatments 
• the reasons why someone with ovarian cancer might want to consider genetic counseling and/or testing and how to find a genetics expert 
• the options for maintenance therapy after treatment
• the specific information on treatment based on gene mutations
• biomarkers, targeted therapy and immunotherapy and their side effects. Do you know if your cancer was tested for any biomarkers? Has your doctor mentioned this to you?
• clinical trials and research

NAVIGATOR: “Would you like to review any of these issues now?” 

NAVIGATOR: “Has anyone mentioned genetic counseling and testing to you?” 

If yes to testing, find out if they know their gene mutation and see if there is treatment information specific to that gene:

NAVIGATOR: “There may be specific guidelines for treating cancer with certain gene mutations. Would you like me to go over any information specific to your mutation?"

If no to testing, find out if they have been referred to a genetic counselor. 

NAVIGATOR: “Expert guidelines recommend genetic counseling and testing for any woman with ovarian cancer.  Would you like me to help you find a genetic counselor who can talk to you about genetic testing and guide you through the process?" 

NAVIGATOR: “Selecting cancer treatment is a very personal decision and one that should be made with your healthcare team.”

NAVIGATOR: “Have you considered obtaining a second opinion? Most insurance companies will pay for a second opinion from another facility. Gathering more information and obtaining another perspective about your diagnosis and treatment options may help you feel more comfortable and confident about the healthcare decisions you make.”

NAVIGATOR: “There are new treatments that have been approved for treating ovarian cancer in women with inherited mutations or with certain tumor biomarkers. Has your doctor mentioned this to you? This includes drugs known as PARP inhibitors.”

NAVIGATOR: “If your cancer has stopped responding to PARP inhibitors, there are some clinical trials looking at people whose cancer returned or stopped responding to PARP inhibitor treatment. Would you like me to tell you how to find information on these studies?"

NAVIGATOR: “Patients at all stages of cancer, even those who are newly diagnosed, may be eligible for clinical trials. Are you interested in seeking treatment through a clinical trial?  I can provide resources for participating in research.”

NAVIGATOR: “Do you have any questions for me?”

Tips and Script

Pancreatic Cancer Treatment

• Pancreatic cancer treatment
• Pancreatic cancer stages & subtypes 
• Genetic testing for people with pancreatic cancer 
• Video: Options for Pancreatic Cancer Treatment
• Treatment listed by gene mutation
• Inherited mutations linked to pancreatic cancer 
• Biomarker testing
• Targeted therapy & immunotherapy
• PARP inhibitors
• Video: GI Cancer Genetics: Experts Discuss Risk, Screening, Prevention and Treatment
  • Direct link to section on cancer treatment 
• Video: Biomarkers and Liquid Biopsies
• Video: What are Targeted Therapies and Immunotherapies? 
• Treatment listed by treatment type  
• Reviews of research on pancreatic cancer

Tips for Peer Navigators 

• Individuals who select this topic may:
  • be newly diagnosed with pancreatic cancer  
  • be diagnosed with pancreatic cancer that has stopped responding to treatment or has progressed
  • be diagnosed with pancreatic cancer recurrence  
  • be currently in treatment for pancreatic cancer
  • be a caregiver who wants to learn more
  • or may not have had testing for BRCA, CDKN2A, Lynch syndrome or another gene linked to pancreatic cancer 
• If they are interested in obtaining support, a better understanding of available cancer treatments and how genetic testing or an inherited mutation may affect their decision-making, FORCE's website provides information on cancer stages and types, reasons to have genetic counseling and testing, treatment options and help finding specialists.
• You can mention that comprehensive cancer centers provide second opinions. Two great resources are NCCN and the National Cancer Institute.

Information for people with pancreatic cancer: Genetic testing

• Genetic testing may affect their treatment options, medical outcomes and risk for another cancer. All people with pancreatic cancer meet national guidelines for genetic counseling and testing. They can learn more about genetic testing in pancreatic cancer here: Genetic testing for people with pancreatic cancer 
  • People should be encouraged to meet with a genetic counselor if they have not already done so to better understand how an inherited mutation may affect their treatment plan. 
  • If they have already had genetic testing, you may also direct them to specific information about their gene mutation (see below)

Helping people with a known mutation find information on their gene

• Treatment listed by gene mutation
  NOTE: This link has specific information on cancer treatment (where available) for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53. Some (but not all) inherited mutations may have specific treatments or other considerations that may relate to that specific mutation. Not all mutations have specific treatment considerations.

Once they click on their gene, they need to scroll down to the box with “Cancer Treatment” to see the treatment information for that specific gene.

Information for people newly diagnosed: Staging

• The stage of a cancer refers to the size of the cancer and whether the cancer has spread within and beyond the organ.
• Once cancer has been diagnosed, a series of tests are usually performed to determine if the cancer has spread and to identify the subtype of cancer. A treatment plan can be developed based on these results.  
• More information can be found here: Pancreatic Cancer Stages & Subtypes 

Information for people with advanced or recurrent cancer: Biomarker testing    

• Biomarker testing usually refers to tests performed on a tumor to see which targeted therapies or immunotherapies are most likely to work best. In pancreatic cancer, biomarker testing may be important for people with advanced cancer.
• Results can help the doctor select the next treatment. Biomarker test resultls may help identify people eligible for certain clinical trials.
• More information can be found here:  Pancreatic Cancer: Biomarker Testing
• There is also a more general section on biomarker testing that provides more detail about biomarkers that are common in people with inherited mutations: DNA Damage Repair and Cancer Treatment

They may also want to view these webinars for more information: 

• Video: What are Liquid Biopsies and What is Their Role in Screening and Treatment of Gastrointestinal Cancers?
• Video: Biomarkers and Liquid Biopsies

Information for people with pancreatic cancer of any stage: Genetic testing

• Genetic testing for inherited cancer risk is recommended for anyone diagnosed with pancreatic cancer at any stage.
• More information about genetic testing can be found here: Pancreatic Cancer: Genetic Testing for Inherited Mutations

Information for people with advanced or recurrent cancer: Targeted therapies and immunotherapies

• This section has information on these topics specific to pancreatic cancer. They will also find clinical trial links for these therapies at the bottom of the page.
• This section is particularly important for people with pancreatic cancer. They may qualify for treatment with a PARP inhibitor (if they have an inherited BRCA1 or BRCA2 mutation) or immunotherapy (especially if they have Lynch syndrome or a biomarker known as Microsatellite Instability or MSI-High or Mismatch Repair Deficiency) or some other treatment depending on biomarker test results. 
• More information can be found here: Targeted therapy & immunotherapy
• If they are looking for additional information specifically on PARP inhbitors, we also have a section on these drugs here: PARP inhibitors
• They will also find clinical trial links for these therapies on the right side of the page. They can look for additional research studies using our Search and Enroll Tool. 

They may also want to view these webinars for more information: 

• Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me?
• Video: What are Targeted Therapies and Immunotherapies?
• Video: Options for Pancreatic Cancer Treatment

Information for people in treatment: Managing treatment side effects

• Our section on cancer treatment by treatment type has information about common side effects for different types of treatment. 

• Under each treatment modality is a section on common side effects and their management

Information for people in treatment: Clinical trials and research

• Clinical trials are an option for all people with pancreatic cancer, even those who are newly diagnosed.  
• Here is a link to our Search and Enroll Tool and studies specifically for people diagnosed with pancreatic cancer.
• They can also our quick search to look up treatment studies by gene mutation and our in-depth search to search for studies on clinicaltrials.gov. 
• Mention our XRAY program, where we evaluate research on cancer topics and point them to the link for articles on pancreatic cancer.  

Suggested Script 

 NAVIGATOR: “I see you’re interested in learning more about pancreatic cancer treatments. Our website includes information on standard of care based on national guidelines. Consult with your physician to discuss care that addresses your personal situation. After this call, I'm going to send you all the information I have on this topic. It explains all of your options. Is there anything specific that you would like to discuss? We have information on:

• the stages of pancreatic cancer
• the types and side effects of different treatments 
• the reasons why someone with pancreatic cancer might want to consider genetic counseling and/or testing and how to find a genetics expert 
• the specific information on treatment based on gene mutations
• biomarkers targeted therapy and immunotherapy and their side effects. Do you know if your cancer was tested for any biomarkers? Has your doctor mentioned this to you?

NAVIGATOR: “Would you like to review any of these issues now?” 

NAVIGATOR: “Has anyone mentioned genetic counseling and testing to you?” 

If yes to testing, find out if they know their gene mutation and see if there is treatment information specific to that gene:

NAVIGATOR: “There may be specific guidelines for treating cancer with certain gene mutations. Would you like me to go over any information specific to your mutation?"

If no to testing, find out if they have been referred to a genetic counselor. 

NAVIGATOR: “Expert guidelines recommend genetic counseling and testing for any person with pancreatic cancer.  Would you like me to help you find a genetic counselor who can talk to you about genetic testing and guide you through the process?" 

NAVIGATOR: “There are treatments that have been approved for treating pancreatic cancer in people with inherited mutations or with certain tumor biomarkers. Has your doctor mentioned this to you?”

NAVIGATOR: “Selecting cancer treatment is a very personal decision and one that should be made with your healthcare team.”

NAVIGATOR: “Have you considered obtaining a second opinion? Most insurance companies will pay for a second opinion from another facility. Gathering more information and obtaining another perspective about your diagnosis and treatment options may help you feel more comfortable and confident about the healthcare decisions you make.”

NAVIGATOR: “Patients at all stages of cancer, even those who are newly diagnosed, may be eligible for clinical trials. Are you interested in seeking treatment through a clinical trial? I can provide resources for participating in research.”

NAVIGATOR: “Do you have any questions for me?”

Tips and Script

Prostate Cancer Treatment

• Prostate cancer stages & subtypes 
• Genetic testing for people with prostate cancer 
• Treatment listed by gene mutation
• Inherited mutations linked to prostate cancer 
• Treatment for prostate cancer
• Biomarkers, targeted therapy & immunotherapy
• PARP inhibitors
• Video: Prostate Cancer Genetics: Experts Discuss Risk, Screening and Treatment
  • Direct link to section on cancer treatment 
• Video: What's New in Prostate Cancer Treatment?
• Video: Biomarkers and Liquid Biopsies
• Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me?
• Treatment listed by treatment type  
• XRAY reviews of research on prostate cancer

Tips for Peer Navigators

• Individuals who select this topic may:
  • be newly diagnosed with prostate cancer  
  • be diagnosed with prostate cancer that has stopped responding to treatment or has progressed
  • be diagnosed with prostate cancer recurrence  
  • currently be in treatment for prostate cancer
  • or may not have had testing for BRCA, ATM, Lynch syndrome or another gene linked to prostate cancer
  • have received tumor test results which suggested they have an inherited mutation and want to know more about genetic counseling or testing
  • be a caregiver who wants to learn more
• If they are interested in obtaining support, a better understanding of available cancer treatments and how genetic testing or an inherited mutation may affect their decision-making, FORCE's website provides information on cancer stages and types, reasons to have genetic counseling and testing, treatment options and help finding specialists.
• You can mention that comprehensive cancer centers provide second opinions. Two great resources are NCCN and the National Cancer Institute.
• Genetic testing may affect their treatment options, medical outcomes and risk for another cancer. All people with metastatic prostate cancer meet national guidelines for genetic counseling and testing.
  • People should be encouraged to meet with a genetic counselor if they have not already done so to better understand how an inherited mutation may affect their treatment plan. 
  • If they have already had genetic testing, you may also direct them to specific information about their gene mutation.
• Treatment listed by gene mutation
  NOTE: This link has specific information on cancer treatment (where available) for the following genes: BRCA1, BRCA2, Lynch syndrome genes [EPCAM, MLH1, MSH2, MSH6, PMS2], ATM, BARD1, BRIP1, CDH1, CDKN2A, CDK4, CHEK2, NBN, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53. Some (but not all) inherited mutations may have specific treatments or other considerations that may relate to that specific mutation. Not all mutations have specific treatment considerations.

Once they click on their gene, they need to click on Tab #4 “Cancer Treatment” to see the treatment information for that specific gene.

• Once cancer has been diagnosed, a series of tests are usually performed to determine if the cancer has spread and to identify the subtype of cancer. A treatment plan can be developed based on these results.  More information can be found here: Prostate cancer stages & subtypes
• The stage of a cancer refers to the size of the cancer and whether the cancer has spread within and beyond the organ.

Information for people with prostate cancer: Genetic testing

• Genetic testing for inherited cancer risk is recommended for people with certain types of prostate cancer.
• More information about genetic testing can be found here: Prostate Cancer: Genetic Testing for Inherited Mutations

Information for people with advanced or recurrent cancer: Biomarker testing    

• Biomarker testing usually refers to tests performed on a tumor to see which targeted therapies or immunotherapies are most likely to work best. In prostate cancer, biomarker testing may be important for people with advanced cancer.
• Results can help the doctor select the next treatment and may make people eligible for certain clinical trials.
• More information can be found here:  Prostate Cancer: Biomarker Testing
• There is also a more general section on biomarker testing that provides more detail about biomarkers that are common in people with inherited mutations: DNA Damage Repair and Cancer Treatment

Information for people with advanced or recurrent cancer: Targeted therapies and immunotherapies

• Targeted therapy, PARP inhibitors and immunotherapy 
  This section has information on these topics specific to prostate cancer. They will also find clinical trial links for these therapies at the bottom of the page. This section is particularly important for people with prostate cancer. They may qualify for treatment with a PARP inhibitor (if they have an inherited or a tumor mutation in one of several genes) or immunotherapy (especially if they have Lynch syndrome or a biomarker known as Microsatellite Instability or MSI-High or Mismatch Repair Deficiency).
• They may also want to view these more general videos, including: 
  • Video: What is Targeted Therapy? What is Immunotherapy? Will They Work for Me?
  • Video: What are Targeted Therapies and Immunotherapies?
  • Video: Targeted Therapies and Immunotherapies Q & A Panel  
  • Video: What's New in Prostate Cancer Treatment? 
    This video is from our 2024 conference, so it will have recent information about treating prostate cancer in people with inherited mutations.

Information for people in treatment: Managing treatment side effects

• Treatment listed by treatment type 
  This section has information on cancer treatment for the following types of treatment: chemotherapy, targeted therapies, immunotherapy, surgery and radiation and a section on biomarkers that includes information about tumor testing for BRCA, HRD, MSI-High and MMR-D, biomarkers often found in people with inherited mutations.

This section is also where they can find information on side effects and how to manage them for each type of treatment (usually tab #3).

Information for people in treatment: Clinical trials and research

• Clinical trials are an option for people with prostate cancer, even those who are newly diagnosed.  
• Here is a link to our Search and Enroll Tool and studies specifically for people diagnosed with prostate cancer.
• They can also our quick search to look up treatment studies by gene mutation and our in-depth search to search for studies on clinicaltrials.gov. 

• XRAY reviews of research on prostate cancer: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link on articles on prostate cancer.

Suggested Script 

NAVIGATOR: “I see you’re interested in learning more about prostate cancer treatments. Our website includes information on standard of care based on national guidelines. Consult with your physician to discuss care that addresses your personal situation. After this call, I'm going to send you all the information I have on this topic. It explains all of your options. Is there anything specific that you would like to discuss? We have information on:

• the stages of prostate cancer
• the types and side effects of different treatments 
• the reasons why someone with prostate cancer might want to consider genetic counseling and/or testing and how to find a genetics expert 
• the specific information on treatment based on gene mutations
• biomarkers, targeted therapy and immunotherapy and their side effects. Do you know if your cancer was tested for any biomarkers? Has your doctor mentioned this to you?
• clinical trials and research”

NAVIGATOR: “Would you like to review any of these issues now?” 

NAVIGATOR: “Expert guidelines recommend genetic counseling and testing for any man with metastatic prostate cancer and men with prostate cancer and a family history of other cancers. Has anyone mentioned genetic counseling and testing to you?” 

If yes to testing, find out if they know their gene mutation and see if there is treatment information specific to that gene:

NAVIGATOR: “There may be specific guidelines for treating cancer with certain gene mutations. Would you like me to go over any information specific to your mutation?"

If no to testing, especially if they have metastatic prostate cancer, find out if they have been referred to a genetic counselor. 

NAVIGATOR: “Would you like me to help you find a genetic counselor who can talk to you about genetic testing and guide you through the process?" 

NAVIGATOR: “There are new treatments that have been approved for treating advanced prostate cancer in people with inherited mutations or with certain tumor biomarkers. Has your doctor mentioned this to you? This includes drugs known as PARP inhibitors and immunotherapy agents.”

NAVIGATOR: “Selecting cancer treatment is a very personal decision and one that should be made with your healthcare team.”

NAVIGATOR: “Have you considered obtaining a second opinion? Most insurance companies will pay for a second opinion from another facility. Gathering more information and obtaining another perspective about your diagnosis and treatment options may help you feel more comfortable and confident about the healthcare decisions you make.”

NAVIGATOR: “Patients at all stages of cancer, even those who are newly diagnosed, may be eligible for clinical trials. Are you interested in seeking treatment through a clinical trial?  I can provide resources for participating in research.”

NAVIGATOR: “Do you have any questions for me?”

Tips and Script

Paying for Cancer Treatment 

• Insurance coverage
• Financial assistance
• Laws & Protections
• Health insurance appeals
• Patient Advocate Foundation
• Triage Cancer

Tips for Peer Navigators 

• FORCE is unable to provide financial assistance for cancer treatment or other health services. A list of resources that we know about are listed in the Cancer Treatment and Insurance & Paying for Care sections of our website.
• The majority of health insurance companies must cover the cost for standard-of-care cancer treatment. If an individual’s insurer denies these services, s/he can visit the Insurance & Paying for Care section of our website to understand coverage requirements. If they believe they are not getting coverage that they are entitled to, refer them to the Health Insurance Appeals section to learn what options they have.
• Most comprehensive cancer centers will provide second opinions and insurers typically cover these.
• Most hospitals, clinics and healthcare systems have nurse navigators, social workers or financial assistance counselors who can help explain options and direct individuals to resources that provide assistance in paying for medical care or living expenses. If they don’t have access to this, the Patient Advocate Foundation is a great resource for those with no insurance, private insurance or Medicaid. They have case managers who can identify resources or help with appeals. For people with Medicare, the Medicare Rights Center is a good place to turn for assistance.
• The Financial Assistance section of our website provides general resources, as well as resources for people with specific types of cancer (aid for treatment, transportation, living expenses).
• Many drug companies have financial assistance programs. The Cancer Treatment section of our website is organized by type of cancer, treatment, mutation, etc. Links to specific drug/pharmaceutical financial assistance programs can be found at the bottom of each webpage in the “Paying for Services” resource box.
• Information about health insurance coverage and protections is available on the Laws & Protections section of our website.
• For people diagnosed with cancer, some clinical trials cover the cost for medical services as part of the study.

Suggested Script

NAVIGATOR: “I see you would like information on paying for cancer treatment. Do you have health insurance? Are you having any issues?”

If uninsured:

NAVIGATOR: “Unfortunately, financial assistance is limited. FORCE does not have funding for this, but some hospitals and nonprofit assistance programs provide financial aid or free services to people who qualify. Some information can be found in the Insurance & Paying for Care section of our website. I will send you the link.”

If they cannot cover the cost of treatment medications:

NAVIGATOR: “If you are in treatment and need financial assistance for your medications, some drug companies have financial assistance programs. Some information can be found in the Cancer Treatment and Paying for Care sections of our website. I will send you the links.”    

If they have insurance, but are not getting traction:

NAVIGATOR: “Since you are having a difficult time with your insurer, you may want to look at the Health Insurance Appeals section on our website. I will send you the link.”

NAVIGATOR: “Did you know that most hospitals have social workers, nurse navigators or financial assistance counselors who can help? They can explain options and direct you to resources that provide assistance in paying for medical care.” [If they don’t have access to this, you can refer to the Patient Advocate Foundation and Triage Cancer, two great resources for helping people find financial assistance and health insurance to pay for care and for people with no insurance, private insurance or Medicaid. For people with Medicare, you can also refer them to the Medicare Rights Center.]

Tips and Script

Wellbeing & Survivorship

• Well-being, survivorship & previvorship
• Nutrition, exercise & weight
• Emotional health
• Sexual health & intimacy
• Palliative care & integrative medicine
• Survivorship and previvorship
• Find an Expert section
• Video: How Palliative Care Can Help People at Any Stage of Diagnosis
• Video: CBD, Cannabinoids and Melatonin
• Video: Understanding Physical Activity and Bone Mineral Density
• Benefits of Exercise, Acupuncture, Yoga and Herbal Therapies
• Video: Treatment Side Effects: Cancer Survivorship
• Video: Diet and Nutrition 
• Video: Complementary and Integrative Medicine
• Video: Sexuality and Intimacy Issues for Women
• Video: Sexuality and Intimacy Issues for Men 
• Research & media coverage on wellbeing & survivorship
• Video: Body Image & Sexuality After Surgery, Cancer &/or Treatment
• XRAY reviews of research related to wellbeing, survivorship and palliative care

Tips for Peer Navigators 

• This topic provides resources on improving quality of life and applies to all people.
• Many healthcare professionals specialize in addressing the topics covered in this section. You can help people find healthcare professionals with expertise in lymphedema, nutrition, weight management, integrative medicine, sleep, sexual health, and other specialties through our Find an Expert section. 
• Experts have guidelines on exercise, diet and weight management for lowering cancer risk, improving health and wellbeing and survivorship. Regular exercise and a balanced diet provide many health benefits and MAY decrease the risk for certain cancers.
• Always tell individuals, particularly those who are in treatment, that it is important to consult with a doctor and a nutritionist before taking supplements or beginning a new diet or exercise routine. 
• Lymphedema, a common side effect of surgery and radiation, is fluid buildup and swelling that may develop in the arm or leg on the treated side of the body. If your matched peer has had surgery, please make sure you address this and provide the lymphedema information to them. 
• Many individuals are interested in complementing their conventional treatments for symptom management. Integrative medicine (sometimes called complementary medicine) takes into account the whole person (body, mind and spirit). Yoga, acupuncture, massage therapy, reiki, art and music therapy, meditation, chiropractic, homeopathy and hypnotherapy are examples of complementary medicine, and many more types exist. Evidence supports some types of integrative medicine, while others remain unproven.
• Palliative care focuses on improving or preserving quality of life for people facing life-threatening illnesses, such as cancer. Palliative care specialists address a broad range of issues that can affect quality of life and wellbeing, often for people with advanced disease. These include pain and symptom management, emotional distress and advanced care planning, to name a few. Palliative care is not the same as end-of-life care. Palliative care may be appropriate for anyone diagnosed with cancer. 
• Cancer treatment or preventive care can impact how men and women view themselves, their sexual desire and their ability to engage in intimate relationships. Surgery and treatment may change body shape, the sensation of being touched, self-image, sexuality and intimacy.  
• Issues of intimacy and sexuality can affect cancer survivors and previvors and those in active treatment. There are healthcare professionals who address these issues.   
• If you feel uncomfortable discussing this topic at any time during your call, simply let the individual know that you will send them information that will go into more detail; if they then have further questions, they can reach out to [email protected].  
• Mention the videos from our conferences, which addressed many topics related to wellbeing and survivorship. These include:
  • Video: How Palliative Care Can Help People at Any Stage of Diagnosis
  • Video: CBD, Cannabinoids and Melatonin
  • Video: Understanding Physical Activity and Bone Mineral Density
  • Benefits of Exercise, Acupuncture, Yoga and Herbal Therapies
  • Video: Treatment Side Effects: Cancer Survivorship
  • Video: Diet and Nutrition 
  • Video: Complementary and Integrative Medicine
  • Video: Sexuality and Intimacy Issues for Women
  • Video: Sexuality and Intimacy Issues for Men 
• XRAY reviews of research related to wellbeing, survivorship and palliative care: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link on articles on wellbeing and survivorship.

Suggested Script 

NAVIGATOR: “I see that you are interested in learning more about quality of life, well-being, survivorship and previvorship issues. We have information on nutrition, exercise and weight, emotional health, sexual health and intimacy, palliative care, integrative medicine and survivorship/previvorship. What are you interested in learning about?”

NAVIGATOR: “We have tools that can help you find experts in the following areas: nutritionists, sexual health experts, sleep experts, physical therapists, lymphedema experts, palliative care providers and acupuncturists. Would you like me to help you find an expert in your area? ”

NAVIGATOR: “We have webinars that address these issue as well. If you let me know what topics are you most interested in, I can send you links after our call so that you can watch them at your convenience.”

NAVIGATOR: “Do you have any questions for me?”

NAVIGATOR: “Issues regarding body image and intimacy during this journey are extremely common and should be addressed. Fortunately, there are some excellent strategies and products available through your healthcare provider or from a counselor trained in intimacy or sexuality issues.”

NAVIGATOR: "It is important that you let your doctor know if you are experiencing effects from cancer, treatment or prevention that are affecting your quality of life. Ask for a referral to the appropriate experts. Many hospitals and cancer centers have an integrative medicine department, palliative care team or social workers who can also help you address quality of life concerns." 

Tips and Script

Managing Menopause  

• Menopause symptoms
• Managing menopause without hormones 
• Managing menopause with hormones
• Find a menopause expert
• Video: Early Onset Menopause Management with or without Hormones
• Video: Understanding Physical Activity and Bone Mineral Density
• Early Menopause Management for Women who Cannot Take Estrogen Therapy
• Video: Menopause Management without Hormones
• Video: Early Onset Menopause Management with Hormones 
• Video: Menopause Q & A Panel 
• XRAY reviews of research on menopause

Tips for Peer Navigators 

• Many women may call to ask about menopause as they gather information for risk-reducing surgery. It’s important to stress that the menopause experience is different for every woman and that women experience menopausal side effects to differing degrees.
• It is important for women who have undergone surgical menopause or who are considering risk-reducing salpingo-oophorectomy to discuss menopausal symptoms and management with their doctors.
• Common side effects of menopause include: hot flashes, decreased libido, disturbed sleep, memory changes, heart disease, mood changes, fatigue, weight gain, urinary incontinence and osteoporosis. Not everyone will experience these symptoms.  
• The FORCE website has information on most of these side effects and options for managing them. There are hormonal and nonhormonal options for managing most of these side effects. All options should be discussed with healthcare professionals.
• Experts can help manage the side effects of menopause. The FORCE website has resources for finding these experts.  
• Frequently, individuals have questions about bio-identical hormones—hormone replacement preparations that are chemically identical to hormones produced in the body. People also have questions about hormones that are commercially available vs. hormones compounded by a pharmacist. No research has shown increased safety of one preparation over another.
• Research has shown that many women who have never had cancer and who undergo ovary removal before natural menopause can safely take hormone replacement, even if they are considered high risk for breast cancer. They should speak with healthcare professionals about the benefits and risks of hormone replacement for their individual situation.
• You may want to direct them to the videotaped sessions from our most recent conferences:
   
  • Video: Early Onset Menopause Management with or without Hormones (2024)
     
  • Video: Understanding Physical Activity and Bone Mineral Density (2024)
     
  • Video: Early Menopause Management for Women who Cannot Take Estrogen Therapy (2022)
     
  • Video: Menopause Management without Hormones (2021)
     
  • Video: Early Onset Menopause Management with Hormones (2021)
     
  • Video: Menopause Q & A Panel (2021)

• XRAY reviews of research on menopause: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link for reviews of research on menopause.  

Suggested Script

NAVIGATOR: “I see that you are interested in learning about menopause. Are you currently experiencing menopause or are you gathering information about it?” 

If they are gathering information:

NAVIGATOR: “Each woman experiences menopause differently.  Some experience many side effects, while others have mild symptoms or none at all.”

NAVIGATOR: “We have information on the most common side effects of menopause and options for managing these effects, including: 

• hot flashes
• vaginal symptoms
• decreased libido or other sexual side effects 
• sleep disturbance
• memory or mood changes
• weight gain
• heart disease
• bone weakening
• urinary incontinence

NAVIGATOR: “Healthcare providers often recommend a baseline bone density test called a DEXA scan to track bone density before oophorectomy or soon after, followed by annual or semi-annual scans after menopause.”

NAVIGATOR: “Meeting with a healthcare provider or a menopause specialist to discuss your symptoms can help identify options to manage, alleviate or resolve them. The Menopause Society has a list of menopause experts who can help you find the best way to manage your side effects based on your situation. Would you like me to help you find a menopause specialist in your area?”

If the peer is currently experiencing menopause:

NAVIGATOR: “Are you experiencing any particular symptoms that you would like to discuss?” [If so, click on the link above for that symptom for more information.]

NAVIGATOR: “Are you interested in learning more about hormone replacement? Many women who have not had cancer choose to take hormone replacement to alleviate menopause side effects, to improve quality of life or to treat or prevent health consequences from early menopause. The FORCE website has lots of information about types of hormone replacement and how to decide whether or not it is right for you.”

NAVIGATOR: “The choice of hormones depends on your situation and symptoms. It is important that you discuss your options and risks with your healthcare provider.”  

NAVIGATOR: “Estrogen, progesterone and testosterone are hormones that are produced naturally in a woman’s body. Surgical menopause reduces levels of these hormones and can cause menopausal symptoms.”  

NAVIGATOR:  “Would you like me to explain the different types of hormone replacement?”  

If they answer yes:

• “Estrogen Replacement Therapy (ERT) usually refers to hormone replacement therapy containing estrogen alone and is used in women who have had a hysterectomy (removal of the uterus) and a salpingo-oophorectomy (removal of the fallopian tubes and ovaries).
• Hormone Replacement Therapy (HRT) usually refers to preparations of estrogen combined with progesterone. Because using estrogen alone can increase the risk of uterine cancer, adding progesterone to hormone replacement protects the uterus from cancer.
• Bio-identical hormones are hormone replacement preparations that are chemically identical to hormones produced in the body. There is no evidence to show that bio-identical hormones are safer than other preparations.
• Both commercial and compounded hormone therapies have risks and benefits. I will send you more information about this so that you can review it at your convenience.”  

NAVIGATOR: “Remember that the menopause experience is individual and responses to hormone replacement appear to be individual, as well. Consult with your doctor to discuss your situation and options.” 

NAVIGATOR: “FORCE has several recent expert webinars on menoapuse, ‘Menopause with and without Hormones’ and ‘Long-term Consequences of Menopause’ that can help you learn more about the surgical menopause experience. Would you like me to send information on these webinars to you so that you can watch them at your convenience.”

NAVIGATOR:  “Do you have any specific questions about menopause that you would like to discuss?”

Tips and Script

Hormone Replacement 

Types of hormone replacement 
Estrogen & progesterone 
Decisions about hormone replacement 
Bio-identical hormones 
Commercial vs compounded preparations
Managing early menopause without hormones
Video: Early Onset Menopause Management with or without Hormones
Video: Understanding Physical Activity and Bone Mineral Density
Early Menopause Management for Women Who Cannot Take Estrogen Therapy
Webinar: Menopause with & without hormones
Webinar: Long term consequences of menopause 
Find a menopause expert

Tips for Peer Navigators: 

• It is important for women who have undergone surgical menopause or who are considering prophylactic salpingo-oophorectomy to discuss menopausal symptoms and management with their healthcare team. Effective treatment for such symptoms is available, and is considered appropriate for many women with BRCA mutations.  
• There are healthcare experts who are specifically trained in managing menopause, including early surgical menopause in women with mutations. The Menopause Society has a database of healthcare professionals trained in menopause management. 
• Concerns regarding menopausal symptoms should not discourage women with mutations in BRCA or other genes from pursuing risk-reducing removal of ovaries and fallopian tubes when appropriate.  
• Taking hormone treatments to manage menopausal symptoms is a complex topic. Women may consider hormone replacement as ONE of the treatments for managing their symptoms. We provide information to help women have a conversation with their doctor about their options.
• Breast cancer survivors are not considered ideal candidates for hormone replacement, however there is limited data about the safety of hormone replacement for breast cancer survivors with BRCA mutations who experience early surgical menopause. 

• Frequently, individuals have questions about bio-identical hormones—hormone replacement preparations that are chemically identical to hormones produced in the body. No evidence shows that bio-identical hormones are safer than other preparations.

• It is important for women to discuss menopausal symptoms and management with their health care team. The menopause experience is individual. Response to hormone replacement appears to be individual as well. 

Suggested script:  

NAVIGATOR: “I see that you are interested in learning more about hormone replacement. Many women who have not had cancer choose to take hormone replacement to alleviate menopause side effects, to improve quality of life, or to treat or prevent health consequences from early menopause. The FORCE website has lots of information about types of hormone replacement and how to decide whether or not it is right for you.”

NAVIGATOR: “The choice of hormones depends on your situation and symptoms. It is important that you discuss your options and risks with your health care provider.”  

NAVIGATOR: “Estrogen, progesterone, and testosterone are hormones that are produced naturally in a woman’s body. Surgical menopause reduces levels of these hormones and can cause menopausal symptoms.”  

NAVIGATOR:  “Would you like me to explain the different types of hormone replacement?”  

If they answer yes …

 • “Estrogen Replacement Therapy (ERT) usually refers to hormone replacement therapy containing estrogen alone and is used in women who have had hysterectomy (removal of the uterus) and salpingo-oophorectomy (removal of the fallopian tubes and ovaries).

• Hormone Replacement Therapy (HRT) usually refers to preparations of estrogen combined with progesterone. Because using estrogen alone can increase the risk of uterine cancer, adding progesterone to hormone replacement protects the uterus from cancer.

• Bio-identical hormones are hormone replacement preparations that are chemically identical to hormones produced in the body. No evidence shows that bio-identical hormones are safer than other preparations.

• Both commercial and compounded hormone therapies have risks and benefits. I will send you more information about this so that you can review it at your convenience.”  

NAVIGATOR: “Remember that the menopause experience is individual, and response to hormone replacement appears to be individual as well. Consult with your doctor to discuss your situation and options.” 

NAVIGATOR: “There are specially trained experts in menopause management. The Menopause Society has a list of these practitioners by location. Would you like me to help you find people in your area?"

NAVIGATOR: “FORCE has several webinars on this topic, that can help you learn more about the surgical menopause experience. I will send information on these webinars to you so that you can watch them at your convenience.”

NAVIGATOR:  “Do you have any specific questions about hormones that you would like to discuss?”

NAVIGATOR: "Hormone replacement isn't right for everyone. FORCE has information and webinars that cover nonhormonal options for managing menoapuse symptoms. Would you like me to send that information to you? 

Tips and Script

Fertility & Family Planning 

• Cancer treatment & fertility preservation
• Assisted reproductive technology (ART)
• Preimplantation genetic diagnosis (PGD)
• Pregnancy after cancer
• Adoption after cancer
• Paying for fertility care & assisted reproductive technology
• Video: Fertility and Parenting Issues for Survivors and Previvors
• Video: Screening for Breast Cancer During and After Pregnancy
• XRAY reviews of research related to pregnancy and fertility

Tips for Peer Navigators

• Fertility and family planning issues can affect people of any gender. This can be an incredibly emotional topic. Decisions may rely on a person’s belief system, values or culture. In some cases, major life decisions may need to be made in a fairly short timeframe. Make sure you consider this when speaking with others and be sensitive to their frame of mind.  
• Many cancer treatments can affect fertility, either temporarily or permanently. It is important for people who have not started treatment, but who wish to preserve their fertility, to speak with their doctor about the risks of treatment to fertility and options for fertility preservation. The section on treatment and fertility preservation has information for men and women on the topic.
• There may be special considerations for breast cancer screening for high-risk women who are pregnant or nursing. Our video, Screening for Breast Cancer During and After Pregnancy may be helpful for women in that situation. 
• XRAY reviews of research related to pregnancy and fertility: Mention our XRAY program, where we evaluate research on cancer topics and point them to the link for articles on pregnancy and fertility. 

Suggested Script   

NAVIGATOR: “I see you are interested in learning about fertility and family planning. I will send you information on the following topics:  

• cancer treatment and fertility preservation
• assisted reproductive technology (ART)
• preimplantation genetic diagnosis (PGD)
• pregnancy after cancer
• adoption after cancer
• paying for fertility care and assisted reproductive technology”

NAVIGATOR: “Would you like to talk about anything specific?”

If the peer is a newly diagnosed man or woman and is interested in fertility preservation:

NAVIGATOR: “It’s important to let your doctor know about your fertility concerns and plans for growing your family before you start treatment. Some treatments can affect fertility and you may have options for fertility preservation.”

If the peer is interested in information about pregnancy and cancer screening:

NAVIGATOR: “Since breast cancer is hard to detect and some breast screenings are considered unsafe during pregnancy, experts recommend that women undergo their annual screening prior to becoming pregnant.”  

If the peer is a survivor who is still in reproductive years:

NAVIGATOR: “Current research suggests that many women can safely become pregnant after cancer. It is important that women speak with their oncologists before pursuing pregnancy after breast cancer.”

If the peer is a previvor who does not want to become pregnant:

NAVIGATOR: “Oral contraceptives are medications used by women for birth control. These medications have other important benefits and downsides. I will send you information that will help you understand what this means for your situation. As always, we recommend that you speak to your healthcare provider about the benefits and risks of oral contraceptives.”

If your peer wants to learn about Assisted Reproductive Technology (ART) and In vitro fertilization (IVF):

NAVIGATOR: “In vitro fertilization (IVF) is a fertility treatment in which a woman’s eggs are removed and then fertilized in a test tube. Although there hasn't been a lot research, the data available suggests that fertility medication and in vitro fertilization is safe for people with an inherited mutation or hereditary cancer risk. IVF can be expensive. Some, but not all, insurance covers the procedure.”

[NOTE TO PEER NAVIGATOR: PGD is a controversial topic. If peers are upset that you brought it up, please let them know that FORCE takes no position on this procedure, but it is our responsibility to share information on all treatments that affect our community.]

Preimplantation genetic diagnosis (PGD):

NAVIGATOR: “Preimplantation genetic diagnosis (PGD) is a medical procedure that allows people with a disease-causing hereditary mutation to have children who do not carry the mutation. Would you like information about this?” [If yes, continue reading below.]

NAVIGATOR: “PGD includes IVF, a fertility treatment. When an embryo reaches a certain size in the test tube, one cell is removed and is tested for the hereditary disease in question. Once the genetic status is determined, parents can decide which embryos they want implanted.”

Tips and Script

Participating in Research 

• Featured research studies
• Video: Participating in Clinical Trials for People with Inherited Mutations: Why, When and How
• How to search for research studies
• Search for screening & prevention studies  
• Search for treatment studies
• Search for quality of life studies

Tips for Peer Navigators 

• Become familiar with how to find research studies on our website and practice using the search tool so that you can help others.
• People may worry that they will receive below standard care if they participate in research studies. Research studies actually have many built-in safety mechanisms to protect participants from harm and assure that they receive at least standard of care.
• People may mistakenly believe that research studies are only for people who have run out of options. In fact, there are research studies enrolling patients with every stage of cancer, as well as prevention and quality of life studies. 
• Some treatments may make people ineligible for certain clinical trials. For people who are newly diagnosed, newly recurrent, or their cancer has progressed, if they are interested in a clinical trial they may want to explore their options before starting treatment if their doctor says it's safe to do so.
• People may be concerned about telling their doctors that they would like to participate in a clinical trial at another facility. Encourage the caller to speak with their current healthcare provider to discuss research participation, even if it is at another facility.
• The study contact or study coordinator is there to answer questions and facilitate enrollment into clinical trials. If a caller is interested in a study, encourage them to reach out to the study coordinator or study contact to get more information.
• We have tips that can help people find research studies more easily.
• Note that there are eligibility requirements for individual studies and trials. It's important to read the details.
• The video, Participating in Clinical Trials for People with Inherited Mutations: Why, When and How provides an overview on how people can find studies enrolling participants with inherited mutation. 

Suggested Script  

NAVIGATOR: “To obtain better options for future generations and possibly for ourselves, you may want to consider participating in research studies.”

NAVIGATOR: “There may be research studies looking at cancer detection, prevention or treatment. Would you like me to help you find a study?”

NAVIGATOR: “FORCE has a listing of available research and clinical trials on our website. There's even a search tool you can use to find studies that apply to you. I’ll send you the link so you can explore your options. We can help you use the tool to find studies to discuss with your healthcare team.”

Tips and Script

Support and Resources

• Attend a support meeting or event
  • By Gene
    • APC, CDH1, CDKN2A, PTEN, TP53 & Other Rare Mutations
    • ATM, BARD1, BRIP1, CHEK2, RAD51C & RAD51D Mutations
    • BRCA1, BRCA2 & PALB2 Mutations
    • Lynch Syndrome Mutations
  • By Community
    • Black, African American Community Connections
    • Breast Cancer Survivor, Thrivers and People in Treatment
    • Espanol
    • LGBTQIA+
    • Men
    • Parents or Caregivers
    • Previvors
    • Young Previvors
  • By Surgery
    • Gynecologic Surgeries & Menopause
    • Mastectomy Prep & Recovery

• Participate on our message boards

• Register for our private Facebook group

• Find healthcare providers and services

• Learn to Spot Online Health Misinformation - This tool and quiz helps you learn which online health information is trustworthy.

Tips for Peer Navigators  

• You are not likely to provide all the information and support that people need on a single call or email exchange. Based on an individual’s situation, make sure you let them know about other areas for support, including support meetings on Zoom, Private Facebook group, message boards (a great way to find someone who is going through a similar specific situation) and our website. You can also point them to resources to find financial assistance programs and healthcare providers. To find and register for a support meeting, please direct them to on our website. Link is included above. 

Suggested Script  

NAVIGATOR: “FORCE offers many ways for you to obtain support and to network with others to ensure that you do not face hereditary cancer alone. You can connect with others by attending Zoom support meetings by your gene or a specific community that resonates with you or participating on our online message boards and private Facebook group. These options provide you with opportunities to meet people who share a similar situation as you and for you to ask questions, state concerns, share resources and support one another, all at your convenience. Your resource guide contains all of these links, plus information regarding how to learn which online health information is trustworthy. If there is one thing that I want you to remember before we hang up, it is that FORCE is here to help you. You never have to feel alone. Do you have any further questions?”

End Call Script

Check your notes to make sure you have addressed any questions they have asked during the call.

NAVIGATOR: “It’s been a pleasure talking with you today. If you have any questions about the resource guide or anything else, please feel free to email me. I’m going to send you an email with a survey and would really appreciate it if you would provide feedback about this program. It would be extremely helpful to us as we strive to provide the best support possible.”

NAVIGATOR: “Thank you so much! Goodbye.”