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 risk-management guidelines for people with mutations. We recommend that you speak with a genetics expert, who will look at your personal and family history of cancer and help you make decisions about how to manage your risk for cancer.
Note: "men" and "women" refers to the sex you were assigned at birth.
Breast cancer risk management in women
Beginning age | Recommendation | Additional information |
---|---|---|
25 | Learn to be aware of changes in your breasts. | Based on NCCN guidelines for women of average risk. |
25 | Breast exam by doctor every 1-3 years. | Based on NCCN guidelines for women of average risk. |
30-35 | Discuss the benefits, risks and costs of yearly breast with and without contrast with your doctor. | |
40 (or earlier based on family history of breast cancer) | Yearly . | |
No set age | More research is needed to show whether people with inherited mutations benefit from risk-reducing mastectomy. Discuss with your doctor about the option of risk-reducing mastectomy based on your personal and family history of cancer. | |
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. |
Ovarian and cancer risk management
Beginning age | Recommendation | Additional information |
---|---|---|
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:
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No set age | More research is needed to show whether people with inherited mutations benefit from risk-reducing surgery to remove their ovaries and . Currently, experts recommend that you have a discussion with your doctor about the option of risk-reducing surgery based on your family history of cancer. |
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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. 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. |
Pancreatic cancer screening
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.
Beginning age | Family history | Recommendation |
---|---|---|
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 |
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40 |
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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 an 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 risk-management studies enrolling people with inherited mutations. Check study listings or contact the study team to see if you are eligible.
Multiple cancers
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry for people who have had genetic panel testing. The goal of the PROMPT Registry is to follow people with mutations or variants in genes on these panels, so that patients, physicians and researchers can more clearly understand these lesser-known risks. This study is open to people with an or in a number of different genes, including: , , , , , , and others.
- 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.
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.
- NCT05129605: Cancer Genetic Risk Evaluation and Screening Study (PROGRESS). This study will look at how well MRI works as a screening tool for men at high risk for cancer. This study is open to men with inherited mutations in , , , , , , , , , , , , , , , and other genes.
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.
- 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.
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 an in one of the following genes: , , , CDKN2A, , or .
- 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.