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 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 "men" and "women" we are referring to the sex you were assigned at birth.
NCCN risk management guidelines for people with mutations include information on the following cancers:
People with an mutation may also qualify for clinical trials looking for more effective screening or prevention for cancer.
Colorectal cancer
Beginning age | Recommendation |
---|---|
20-25 (or 2-5 years before the earliest age of colon cancer in the family, if diagnosed before age 25) |
High quality colonoscopy every 1-2 years.Speak with your doctor about whether your screenings should be yearly or every two years. Men, people over age 40, and people with a personal history of colon cancer or colon may benefit most from yearly screenings. |
No set age | Daily aspirin can decrease the risk for colorectal cancer. The best dose and timing for aspirin is not known. Speak with your doctor about the benefits and risks, best timing and dose. |
Endometrial cancer
Beginning age | Recommendation | Additional information |
---|---|---|
No set age |
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:
|
30-35 | 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 . However, endometrial biopsy is an accurate test for finding cancer. |
After menopause | Discuss the benefits, risks and costs of regular endometrial cancer screening through transvaginal . | Endometrial cancer screening does not have proven benefit in individuals with . Despite this, some people prefer to undergo regular screening through transvaginal . |
After completion of child-bearing |
Discuss the benefits, risks and costs of a risk-reducing hysterectomy (surgical removal of the uterus). | Discuss the benefits, risks and costs of a risk-reducing hysterectomy (surgical removal of the uterus). |
No specified age | Speak with your doctor about the benefits, risks and timing of oral contraceptives. | Oral contraceptive pills (birth control) may lower the risk for endometrial cancer associated with . |
Ovarian and cancer risk management
Beginning age | Recommendation | Additional information |
---|---|---|
No set age |
Be aware of ovarian cancer symptoms. Report any of the following symptoms that persist for several weeks and are a change from normal to your doctor. Routine ovarian cancer screening using transvaginal and a blood test has not shown benefit and is not recommended. |
Symptoms of ovarian cancer include:
|
After completion of child-bearing | Speak with your doctor about the benefits, risks and timing of risk-reducing removal of ovaries and (). |
|
No set age | Have a discussion with your doctor about the benefits and risks of oral contraceptives for lowering ovarian cancer risk. |
Oral contraceptives (birth control pills) may lower the risk for ovarian cancer in people with . |
Pancreatic cancer screening for people with a family history
There are two tests that are used to look for pancreatic cancer.
- Contrast-enhanced magnetic resonance cholangiopancreatography (MRCP) is a special type of imaging that looks closely at the pancreas, liver, gallbladder, bile duct and pancreatic duct to find abnormalities such as cancer.
- Endoscopic (EUS) involves passing a tiny scope with an attached probe down the esophagus to the stomach. This allows doctors to look closely at the pancreas.
Beginning age | Recommendation |
---|---|
50 (or younger based on family history) |
For mutation carriers with a first- or second- degree relative with pancreatic cancer
|
Bladder, kidney and ureteral cancer
Beginning age | Recommendation |
---|---|
30-35 |
For mutation carriers with a relative with bladder, kidney or ureteral cancer
|
cancer
Beginning age | Recommendation |
---|---|
40 |
Have a conversation with your doctor about the potential benefits, risks, costs and limitations of screening for cancer.
|
Stomach cancer
Beginning age | Recommendation |
---|---|
30-40 (or younger based on family history) |
Begin stomach cancer screening using a procedure known as EGD (esophagogastroduodenocopy) and repeat every 2-4 years.
|
Brain cancer
Beginning age | Recommendation |
---|---|
No set age | Learn the signs of brain cancer and report any symptoms to your doctor. |
Skin cancer
Beginning age | Recommendation |
---|---|
No set age | Talk with your doctor about the benefits of having a skin exam every 1-2 years with an expert trained in finding skin changes related to |
Other cancer screening and prevention
Guidelines do not address screening or prevention of other cancers for people with mutations. However, clinical trials may be available.
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 .
Colorectal cancer
- 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 .
Gynecologic cancers
- 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.
cancer
- 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 in , , , , , , , , , , , , , , , and other genes.
Pancreatic cancer
- 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.