I've Tested Positive, Now What?
Cancer risk associated with inherited mutations
If you have tested positive for an inherited mutation, 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 cancer risk. Note that when we use "men" and "women" we are referring to the sex you were assigned at birth.
Risks for women
Women who have a gene mutation have an increased risk of developing a specific type of breast cancer called lobular breast cancer. The estimated lifetime risk in a woman with a mutation is 40-60 percent.
Risks for all people
Gastric cancer: People with an inherited mutation have an increased risk of developing a specific type of stomach (gastric) cancer called diffuse gastric cancer.
- lifetime risk for gastric cancer is 67 percent for men and 83 percent for women. This compares to less than 1 percent in the general population.
- average age of diagnosis is 37 compared to 68 in the general population.
Some research has suggested that mutations may increase the risk for other cancers. However, these studies are not conclusive and lifetime risks for these cancers are not clear. For this reason, genetics experts often look at family history of cancer to help people with mutations understand their risk for additional cancers. Research on and other 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.
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. People with inherited mutations can enroll in PROMPT to help researchers learn more about cancer risks.
- NCT03030404: Hereditary Gastric Cancer Syndromes: An Integrated Genomic and Clinicopathologic Study of the Predisposition to Gastric Cancer. Researchers want to gather data about hereditary gastric cancers. They want to learn about changes these cause in the body and about the genes involved.