Risk Management
Read about different genes that are linked to hereditary cancer, their associated risks and guidelines for screening, preventing and treating cancers in people with inherited mutations in these genes.Stay up to date on research and information
Sign Up for FORCE NewslettersRisk Management for People with Inherited Mutations
The National Comprehensive Cancer Network (NCCN) provides guidelines for people with a mutation to manage their cancer risk. We recommend that you speak with a genetics expert who can look at your personal and family history of cancer and can help you decide on a plan for managing your risk. Note that when we use "female" and "male" or "women" and "men" we are referring to the sex you were assigned at birth.
NCCN recommends that all people with an inherited mutation receive education on the signs and symptoms of BRCA1-related cancers. NCCN guidelines for specific cancers are listed below.
People with a mutation may also qualify for clinical trials looking for more effective screening or prevention for cancer.
Breast cancer risk management in women
Beginning age | Recommendation | Additional information |
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18 | Learn to be aware of changes in your breasts. | |
25 | Breast exam by doctor every 6-12 months. | |
25 | Yearly breast with and without contrast beginning at age 25 and continuing until age 75. | If is not available, screening should begin at age 25. |
30 | Yearly . | |
No set age | Discuss the benefits, risks and costs of double mastectomy with your doctor. |
Risk-reducing mastectomy lowers breast cancer risk by 90%, but has not been shown to improve survival. Even after double mastectomy, some breast tissue, and therefore cancer risk remains. |
No set age | Discuss the benefits, risks and costs of medications to lower the risk for breast cancer with your doctor. | Tamoxifen or other estrogen-blocking drugs may lower breast cancer risk. Medications or vaccines are being studied in clinical trials. |
75 | Consider whether to continue, stop or change breast screening. |
Risk management for male breast cancer
Beginning age | Recommendation |
---|---|
35 | Learn how to do a breast self-exam and be aware of changes in your breast. |
35 | Breast exam by doctor every 6-12 months. |
50 (or earlier based on the youngest case of male breast cancer in the family) | Have a discussion with your doctor about the benefits, risks and costs of annual mammograms. |
Ovarian, and uterine cancer risk management
Beginning age | Recommendation | Additional information |
---|---|---|
35-40 |
Risk-reducing removal of ovaries and (). Timing of surgery should take into account plans to have children. |
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35-40 | Have a discussion with your doctor about the risks, benefits and costs of removing your uterus (hysterectomy) at the time of . |
The following factors may affect your decision about hysterectomy at the time of RRSO:
|
Before age 50 |
Researchers are studying whether the removal of the only (), while delaying until closer to the age of natural menopause is a safe option for lowering risk in people who are not ready to remove their ovaries. If you are interested in this approach, talk with your doctor about the benefits and risks, and consider enrolling in a research study. |
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No set age | Oral contraceptives (birth control pills) have been shown to lower the risk for ovarian cancer in people with mutations. Have a discussion with your doctor about the benefits and risks of oral contraceptives for lowering ovarian cancer risk. |
Research on the affect of oral contraceptives on breast cancer risk has been mixed. |
No set age |
Become aware of ovarian and primary peritoneal cancer symptoms. Report to any symptoms that persist for several weeks and are a change from normal to your doctor. Routine ovarian cancer screening using transvaginal and a blood test has not shown benefit and is not recommended. |
Symptoms of ovarian cancer include:
|
Guidelines for pancreatic cancer risk management
There are two tests that are used to look for pancreatic cancer in high-risk people.
- MRCP (Contrast-enhanced magnetic resonance cholangiopancreatography) is a special type of imaging that looks closely at the pancreas, liver, gallbladder, bile duct and pancreatic duct to find abnormalities such as cancer.
- EUS (Endoscopic ) involves passing a tiny scope with an attached probe down the esophagus to the stomach. This allows doctors to look closely at the pancreas.
There are two separate organizations with guidelines related to screening for pancreatic cancer in people with mutations, the American Society of Gastrointestinal Endoscopy (ASGE) and the National Comprehensive Cancer Network (NCCN). The guidelines differ on who should receive screening based on gene mutation and family history.
Organization | Beginning age | Family history | Recommendation |
---|---|---|---|
ASGE | 50 (or earlier based on the youngest case of pancreatic cancer in the family) | For mutation carriers regardless of family history of pancreatic cancer |
Annual screening for pancreatic cancer with MRI/MRCP or EUS |
NCCN | 50 (or earlier based on the youngest case of pancreatic cancer in the family) | For mutation carriers with a first- or second- degree relative with pancreatic cancer |
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cancer
Beginning age | Recommendation |
---|---|
40 |
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Other cancers
Melanoma screening
NCCN does not include guidelines for melanoma screening for people with mutations. However, some experts recommend general melanoma risk management such as a yearly full-body skin exam, a yearly eye exam and avoiding too much sun exposure.
Other cancer screening and prevention
There has not been enough research to show a benefit from screening and prevention for other cancers in people who have a mutation. For this reason, experts recommend managing these risks based on your family history. Cancer screening and prevention research studies may be available.
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
The following are studies looking at level of risk or risk-management for people with inherited or mutations. Check study listings or contact the study team to see if you are eligible.
Multiple cancers
- NCT04367675: Testing a Vaccine for Cancer Prevention in People with a or Mutation. This study will look at a new vaccine known as INO-5401 used alone or combined with a second vaccine called INO-9012. The study will test if the vaccine is safe and if it activates the immune system. A goal of this research is to reduce cancer risk in people with a or mutation.
- The Risk Factor Analysis of Hereditary Breast and Ovarian Cancer In Women with , or Mutations. This study seeks to improve researchers’ understanding of how hormonal, reproductive and lifestyle factors may be associated with cancer in this high-risk population.
- Identification and Analysis of Families With Genetic Susceptibility To Cancer Registry. The research laboratory at the Abramson Cancer Center is studying genetic sources of cancer risk. A number of research projects are performed in collaboration with this registry.
- NCT00579488: Clinical Significance of Germline Mutations. The goal of this study is to help us learn more about the roles of genes and cancers that run in families.
Breast cancer
- NCT04711109: Denosumab for Preventing Breast Cancer in Women with a Inherited Mutation (BRCA-P). This study will test the effectiveness of a drug (denosumab) on preventing the development of breast cancer in women with an inherited mutation.
cancer
- NCT03805919: Men at High Genetic Risk for Cancer. This is a cancer screening study using in high risk men. This study is open to men with , and other inherited mutations.
Ovarian cancer
- Validating a Blood Test for Early Ovarian Cancer Detection in High-risk Women and Families: MicroRNA Detection Study (MiDE). The goal of MiDe is to develop a test to detect ovarian cancer. Participants can be expected to provide up to 4 tubes of blood every 6 months for up to 5 years. We can collect these samples through mobile phlebotomy all around the US. The study is enrolling people with , and other mutations.
- NCT04251052: A Study to Compare Two Surgical Procedures in Women with Mutations to Assess Reduced Risk of Ovarian Cancer (SOROCk). This study is looking at whether removal of just the can reduce the risk of ovarian cancer nearly as much as removing both the ovaries and among women with an inherited mutation.
- NCT05287451: Risk Reducing With Delayed as an Alternative to Risk- Reducing Salpingo-oophorectomy in High Risk-Women to Assess the Safety of Prevention. This study will look at outcomes in women with , , , and who remove their first, followed by removal of their ovaries compared to women who undergo standard-of-care removal of their ovaries and at the same time.
- NCT04794322: Developing a Test for the Detection of Ovarian Cancer. The study aims to develop a test for early detection of ovarian cancer using from a growth involving the ovary found in a washing of the uterus (womb), and proteins found in the blood. Participants will not receive the results of their test.
Pancreatic cancer
- NCT03250078: A Pancreatic Cancer Screening Study in Hereditary High Risk Individuals. The main goal of this study is to screen and detect pancreatic cancer and precursor lesions in individuals with a strong family history or genetic predisposition to pancreatic cancer. and Magnetic cholangiopancreatography (MRI/MRCP) will be utilized to screen for early pancreatic lesions.
- NCT02206360: Pancreatic Cancer Early Detection Program. This pancreatic cancer screening study uses esopheal to screen for pancreatic cancer in high risk people. The study is open to people who have a family history of pancreatic cancer and an in , or other genes.
- NCT03568630: Blood Markers of Early Pancreas Cancer. This pancreatic cancer study involves blood samples over time to look for biomarkers of pancreatic cancer in high risk people. The study is open to people with a mutation linked to increased cancer risk.
- NCT02478892: Preliminary Evaluation of Screening for Pancreatic Cancer in Patients with an Inherited Genetic Risk Due to a , , or Mutation. This study uses and endoscopic to screen for pancreatic cancer in people with a BRCA1/2, or mutation.
Additional risk-management clinical trials for people with inherited mutations may be found here.