ATM: Screening & Prevention
Risk Management for People with Inherited ATM Mutations
People with ATM mutations have options for managing their increased cancer risk. Experts at the National Comprehensive Cancer Network (NCCN) created guidelines for people with an ATM mutation to manage their cancer risk. 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 risk.
NCCN recommends that all people with an inherited ATM mutation receive education on the signs and symptoms of ATM-related cancers. NCCN guidelines for specific cancers are listed below.
People with an ATM mutation may also qualify for clinical trials looking for more effective screening, prevention or interception of cancer.
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Beginning Age |
Recommendation |
Additional Information |
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25 |
Breast awareness Learn to be aware of changes in your breasts and potential signs of breast cancer. |
Self exams may be most informative at the end of the menstrual cycle. |
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25 |
Clinical breast exam Breast exam by doctor every 6-12 months.
|
|
|
30-35 |
Discuss screening Have a discussion with your doctor about the benefits, risks and costs of yearly breast with and without contrast. |
|
|
40 |
Yearly . |
|
|
No set age |
Discuss risk-reducing options Tamoxifen or other estrogen-blocking drugs may lower breast cancer risk. Have a discussion with your doctor about the benefits, risks and costs of medications to lower the risk for breast cancer with your doctor. More research is needed to show whether people with inherited mutations benefit from risk-reducing mastectomy. Discuss with your doctor about the option of risk-reducing mastectomy based on your personal and family history of cancer. |
Medications and vaccines to lower risk are being studied in clinical trials. 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. |
|
75 |
Discuss whether to continue screening Have a discussion with your doctor about whether to continue, stop or change breast screening. |
|
|
Source: NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, , vs. 1, 2027. |
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Types of pancreatic cancer screening tests
There are two types of tests that are used to screen for pancreatic cancer in high-risk people.
- MRCP (Contrast-enhanced magnetic resonance cholangiopancreatography) 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.
- EUS (Endoscopic ) involves passing a tiny scope with an attached probe down the esophagus to the stomach. This allows doctors to look closely at the pancreas.
Researchers are testing new approaches to pancreatic cancer screening and prevention through clinical trials.
Pancreatic cancer guidelines
|
Beginning Age |
Family History |
Recommendation |
|
50 |
For mutation carriers regardless of family history. |
Discuss screening
|
|
Source: NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, v. 1, 2027. |
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|
Beginning Age |
Recommendation |
Additional Information |
|
No set age |
Symptom awareness Become aware of ovarian and primary peritoneal cancer symptoms. Report to any 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:
|
|
No set age |
Surgical removal of ovaries and More research is needed to show whether people with inherited mutations benefit from risk-reducing surgery to remove their ovaries and . Currently, experts recommend that you have a discussion with your doctor about the option of risk-reducing surgery based on your family history of cancer. |
If you decide to have risk-reducing surgery:
|
|
Before age 50 |
(removal of the only) Researchers are studying whether the removal of the only (), while delaying until closer to the age of natural menopause is a safe option for lowering risk in people who are not ready to remove their ovaries. If you are interested in this approach, talk with your doctor about the benefits and risks, and consider enrolling in a research study. |
For women who choose this surgery, the guidelines also recommend the following:
|
|
No set age |
Medications to lower the risk Oral contraceptives (birth control pills) have been shown to lower the risk for ovarian cancer in people with mutations and in the general population. No similar research has been done on people with mutations. Have a discussion with your doctor about the benefits and risks of oral contraceptives for lowering ovarian cancer risk. |
Research on the effect of oral contraceptives on breast cancer risk has been mixed. |
|
Source: NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, , vs. 1, 2027. |
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Beginning Age |
Recommendation |
|
40 |
Discuss screening
|
|
75
|
Discuss whether to continue screening For men who have chosen to have cancer screening, have a discussion with your doctor about whether to continue, stop or change the timing of your screening. |
|
Source: Source: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, , v. 1, 2027. |
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Other cancers
Because of the possible link between and , experts suggest that people with an mutation speak with their doctor about the pros and cons and costs of testing for and treating . Together, you can consider your personal and family history and any other risk factors when deciding whether testing may be helpful for you.
More research is needed on the link between mutations and other types of cancers. At the moment there are no additional special screening or prevention recommendations. Experts recommend following general population screening guidelines and considering your family history when managing risks for other cancers. National guidelines exist for screening the following cancers:
Participate in Prevention Research
The screening and prevention studies below are enrolling people with mutations. To search for more studies, visit our Search and Enroll Tool.
Vaccine for People at High Risk for Pancreatic Cancer
Clinicaltrials.gov identifier: NCT05013216
Low Dose Tamoxifen With or Without Omega-3 Fatty Acids for Breast Cancer Risk Reduction
Clinicaltrials.gov identifier: NCT06195306
Using a Shorter Type of MRI as a Screening Tool for People at High Risk for Prostate Cancer
Clinicaltrials.gov identifier: NCT05384535
PATROL Study: Prostate Cancer Screening for People AT Genetic Risk FOr Aggressive Disease
Clinicaltrials.gov identifier: NCT04472338
Screening Study for Men at High Genetic Risk for Prostate Cancer
Clinicaltrials.gov identifier: NCT03805919
Pancreatic Cancer Early Detection for People at High Risk
Clinicaltrials.gov identifier: NCT04970056
Screening in Men at High Risk of Developing Prostate Cancer
Clinicaltrials.gov identifier: NCT05608694
Stories from the Community
October 15, 2020
Finding Hope on the Other Side of Surgery After Learning of my ATM Mutation
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November 01, 2022
Lynch Syndrome, an ATM Mutation and Issues of Gender Identity and Fertility Access
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"While we wait, may we all work, so these hard days need not be wasted" are the words Robert March writes to his daughters in Louisa May Alcott's Little Women. My own father, Jim Miller, shared a similar spirit. He passed away in 2021 from...
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