Cancer risk associated with an inherited mutation
If you have tested positive for a mutation, we recommend consulting with a genetics expert who can assess your personal and family history of cancer, and can help you decide on a plan to manage your cancer risk.
People with an inherited have a greatly increased lifetime risk of developing several types of cancer, with about an 85 percent lifetime risk for developing any cancer. The risks for cancer tend to happen at a younger age compared to people who do not have a mutation. Note that "women" refers to the sex you were assigned at birth.
Risks for all people with a mutation
People who have a mutation in are at increased risk of developing these cancers:
- Renal (kidney): The lifetime risk is about 30 - 35 percent compared to 1-2 percent for an average risk person.
- Thyroid: The lifetime risk is about 35 percent compared to 1 percent for an average risk person. People with inherited mutations are also at increased risk for benign thyroid conditions (e.g., goiter and benign growths)
- Colorectal: The lifetime risk is about 5 - 10 percent compared to 4 percent for an average risk woman. Most people with inherited mutations will develop colorectal and other gastrointestinal , which could become cancers. These may start at a young age.
- Melanoma: The lifetime risk is about 6 percent compared to 2.5 percent for an average risk person. People with mutations may develop melanoma at a young age.
Risks for women
Women who have an in have an increased lifetime risk for these cancers:
- Breast cancer: The lifetime risk with a mutation is about 40 - 60 percent compared to 12.5 percent for those at average risk. The average age of diagnosis is 38 - 50 years, compared to 55 - 64 years for those at average risk.
- Endometrial cancer: The lifetime risk with a mutation is about 25 - 30 percent compared to 3 percent for those at average risk.
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 are studies enrolling people with inherited mutations.
- NCT04042831: in Treating Patients With Biliary Tract Cancer With Aberrant Repair Gene Mutations. This study will look at how well the drug works in treating people who have been diagnosed with biliary tract (bile duct) cancer that has spread to other places in the body and who also have an inherited or tumor mutation in certain genes, including .
- NCT04586270: A Study of TAS0612 for Treating People with Advanced or Cancers. The purpose of this study is to see if TAS0612 is safe in participants with advanced or solid tumor cancer.
- NCT04094675: Sirolimus for With Colon Polyposis. This study is looking at the effect of the drug sirolimus on the number of colon in patients with and polyposis over a 1 year period.
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry. The goal of PROMPT is to help researchers to better understand the risks that are linked to mutations in less well-studied genes.