I've Tested Positive, Now What?
Risk 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 can look at your personal and family history of cancer and can help you decide on a plan to manage your risk. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type. Note that when we use "men" and "women" we are referring to the sex you were assigned at birth.
Breast cancer screening and prevention for women
- Begin annual mammograms at age 40, or earlier based on your family history of breast cancer.
- Have a discussion with your doctor about of the benefits and risks of yearly with contrast beginning at age 30-35.
- There is not enough evidence to show that risk-reducing mastectomy (RRM) benefits women with mutations. Experts recommend considering mastectomy based on family history of breast cancer.
- Tamoxifen and other drugs that block estrogen can reduce breast cancer risk in high-risk women. More research is needed to prove that they are effective for women with mutations.
Male breast cancer screening and prevention
- There are no current guidelines on male breast cancer screening for people with a mutation. Speak with your doctor about the benefits and risks of screening.
Colon cancer screening and prevention
- Begin colonoscopy every 5 years starting at age 40 (or 5-10 years earlier than the age of diagnosis of a close relative with colon cancer).
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.
- 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 inherited mutation 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.
- 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 , , , , , HOXB13, , , , 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 , , , , , , HOXB13, , , , , , , , , and other genes.
- 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.
- 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 inherited mutation 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.