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 inherited 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 determine the best risk management plan. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type. Note that when we use "women" we are referring to the sex you were assigned at birth.
People with a mutation may also qualify for clinical trials looking for more effective screening or prevention for cancer.
Cancer risk management for all people with mutations
Beginning age | Recommendation |
---|---|
7 | Annual thyroid |
Children diagnosed with mutation | Exam by a neurologist and brain if there are symptoms. |
18 (or 5 years earlier than the earliest cancer diagnosis in the family) | Annual physical exam by doctor. |
No set age | Annual skin exam. |
35 (or earlier if symptoms or if a close relative had colorectal cancer before age 40) | Colonoscopy every 5 years. |
40 | Discuss the benefits, risks and costs of kidney ultrasounds every 1-2 years. |
Cancer risk management in women with mutations
Cancer type | Beginning age | Recommendation | Additional information |
---|---|---|---|
Breast | 18 | Learn to be aware of changes in your breasts. | |
25 | Breast exam by doctor every 6-12 months. | ||
30-35 | Yearly breast with and without contrast. | ||
30-35 | Yearly . | ||
No set age | Discuss the benefits, risks and costs of double mastectomy with your doctor. |
Risk-reducing mastectomy lowers breast cancer risk by 90%, but has not been shown to improve survival. Even after double mastectomy, some breast tissue, and therefore cancer risk remains. |
|
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. | |
Endometrial | By age 35 | Endometrial cancer can often be caught early based on symptom awareness followed by a biopsy. Learn to be aware of the symptoms of endometrial cancer and immediately report any symptoms to your doctor. Keep a diary of menstrual cycles in order to detect any changes in bleeding. |
Symptoms of endometrial cancer include:
|
By age 35 | Discuss the benefits, risks and costs of an endometrial biospsy every 1-2 years with your doctor. | Endometrial cancer screening does not have proven benefit in individuals with mutations. However, endometrial biopsy is an accurate test for finding cancer. | |
After menopause | Discuss the benefits, risks and costs of screening using transvaginal with your doctor. | Transvaginal is not recommended for screening in premenopausal women. | |
After completion of child-bearing | Discuss the benefits, risks and costs of a risk-reducing hysterectomy (surgical removal of the uterus). |
Other cancers
There has not been enough research to show a benefit from screening and prevention for other cancers in people who have a mutation. For this reason, experts recommend managing other cancer risks based on family history. Cancer screening and prevention research studies may be available for people with mutations.
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.