I've Tested Positive, Now What?
Cancer risk associated with inherited mutations
If you have tested positive for an mutation, we recommend speaking 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 "men" and "women" we are referring to the sex you were assigned at birth.
cancer risks include the following:
|Cancer type||Lifetime risk with for people with mutation||Lifetime risk for people in general population||Average age of diagnosis for people with mutation||Average age of diagnosis for people in the general population|
|Colorectal||46 - 61%||4.2%||44 years||68 - 72 years|
|Endometrial||34 - 54%||3.1%||49 years||60 years|
|Ovarian||4 - 20%||1.3%||46 years||63 years|
|Kidney/ureter||0.2 - 5%||1.2%||59 - 60 years||Not specified|
|May be elevated||11.6||63 years||66 years|
|Bladder||2 - 7%||2.4%||59 years||73 years|
|Gastric||5 - 7%||0.9%||52 years||68 years|
|Small bowel||.4 - 11%||0.3%||47 years||60s - 70s|
|Brain||.7 - 1.7%||0.6%||No data||59 years|
|Biliary tract||1.9 - 3.7%||0.2%||50 years||70 - 72 years|
People with an inherited mutation may have an increased risk for other cancers. The exact risks for the following cancers are unknown:
- sebaceous skin growths
- breast cancer
Research on how inherited mutations in the gene affect cancer risk is ongoing.
It is important to note that cancer risks are estimates over the course of a person's lifetime. Your lifetime risk and risk over the next five years will vary depending on:
- current age
- sex assigned at birth
- specific mutation
- personal and family health history
- diet, exercise, lifestyle and other factors
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 screening and prevention studies are open to people with .
- NCT03831698: Omega 3 Fatty Acids in Colorectal Cancer (CRC) Prevention in Patients With (COLYNE). This study is looking at the effects of omega-3 acid ethyl esters capsules (generic Lovaza) on molecular and intestinal microbiota changes in participants at high risk for colorectal cancer.
- NCT04379999: Atorvastatin ± Aspirin in Syndrome. This study will investigate whether a common cholesterol lowering agent (atorvastatin) alone or combined with a nonsteroidal anti-inflammatory drug (aspirin) reduces the risk of colorectal cancer (CRC) in high-risk individuals with .
- NCT05257057: Frequency of Endometrial Cancer Precursors Associated With . The purpose of this study is to examine endometrial hyperplasia specimens and compare the frequency of gene mutations between people with endometrial hyperplasia and those with endometrial cancer.
- NCT00508573: Registry for Women Who Are At Risk Or May Have . The goal of this study is to create a registry of information about women who have or are at risk for , to facilitate study of gynecologic cancer risks.
- 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 clinical diagnostic test to detect early-onset ovarian cancer, as currently, no reliable screening or early-detection tests are available. Participants can be expected to provide up to 4 tubes of blood every 6 months for up to 5 years. Samples can be collected through mobile phlebotomy all around the US.
- 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 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 an inherited mutation in , , , , , , HOXB13, , , , , , , , , and other genes.
- NCT02206360: Pancreatic Cancer Early Detection Program. This pancreatic cancer screening study uses esophageal 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 mutation or other mutation linked to increased cancer risk.
- NCT03568630: Blood Markers of Early Pancreas Cancer. This pancreatic cancer study involves blood samples taken over time to look for biomarkers of pancreatic cancer in high-risk people. The study is open to people with an mutation or other mutation linked to increased cancer risk.
- 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 pancreatic lesions.
Other clinical trials for patients with endometrial cancer can be found here.