PTEN (Cowden Syndrome): Risk Management
Risk Management for People with Inherited Mutations
The National Comprehensive Cancer Network (NCCN) provides risk management guidelines for people with a 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 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.
- breast cancer
- endometrial cancer
- thyroid, colorectal, kidney, skin and other cancers
People with a mutation may also qualify for clinical trials looking for more effective screening or prevention for cancer.
In addition to the guidelines below, people with mutations should learn the symptoms of cancer and report any changes in their health to their doctor.
Note that when we use "women" we are referring to people assigned female at birth.
Visit our Partners
PTEN Hamartoma Tumor Syndrome Foundation
This foundations offers support, research and resources for people with inherited PTEN mutations.Beginning Age |
Recommendation |
Additional Information |
18 |
Learn to be aware of changes in your breasts. |
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25 or 5–10 years before the earliest known breast cancer in the family (whichever comes first). |
Breast exam by doctor every 6-12 months. |
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30 or 10 years before the earliest known breast cancer in the family (whichever comes first) |
Yearly breast MRI with and without contrast. |
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30 or 10 years before the earliest known breast cancer in the family (whichever comes first) |
Yearly mammogram. |
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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. |
75 |
Consider whether to continue, stop or change breast screening. |
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Source: NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, vs. 1 2025 |
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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:
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35 |
Discuss the benefits, risks and costs of an endometrial biospsy every 1-2 years with your doctor. |
More research is needed to show a benefit of endometrial cancer screening in people with a PTEN mutation. 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 ultrasound. |
Endometrial cancer screening does not have proven benefit in individuals with Lynch syndrome. Despite this, some people prefer to undergo regular screening through transvaginal ultrasound. |
After childbearing has been completed |
Discuss the benefits, risks and costs of a risk-reducing hysterectomy (surgical removal of the uterus) and salpingectomy (surgical removal of the fallopian tubes). |
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Source: NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic; v1. 3 2024 |
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Beginning Age |
Recommendation |
7 |
Annual thyroid ultrasound |
Children diagnosed with a PTEN mutation |
Exam by a neurologist and brain MRI 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 35) |
Colonoscopy every 5 years |
40 |
Discuss the benefits, risks and costs of kidney ultrasounds every 1-2 years |
Source: NCCN Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, vs. 1 2025 |
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