Cowden Syndrome: What Should I Be Doing About This Condition?
Recommendations for cancer screening for people with Cowden syndrome are updated and published each year by the National Comprehensive Cancer Network (NCCN). In many cases, screening can help manage benign growths and detect any cancer at an early stage, when it is best treated. The recommended screenings for people with CS are summarized in Table 2.
Because of the risk for breast cancer, women with CS should have increased breast cancer screening. Currently this includes performing monthly breast self-examination, getting a breast exam from your doctor every 6 months beginning at 25 years of age, and an annual mammogram and breast MRI beginning at 30 to 35 years of age (or 5-10 years before the earliest known breast cancer in the family; whichever comes first). For some women with dense breast tissue that can make it harder to detect breast cancers, preventative mastectomy may be an option. Women should also be aware of the signs and symptoms of possible uterine cancer, such as abnormal vaginal bleeding, pelvic pain, pain during intercourse and painful urination.
Both men and women should receive thyroid cancer screening that includes an ultrasound of the thyroid at age 18 and annual thyroid palpation (having a doctor feel the thyroid) after that. You might also consider having an annual ultrasound. Because thyroid nodules can be a common feature, an experienced endocrinologist should evaluate any thyroid nodules to determine if they require follow-up, such as a biopsy.
Skin cancer screenings should also be considered. Yearly visits to a dermatologist can help manage the CS skin findings and also screen for skin cancer.
There is some recent evidence that the risk for colon cancer may be increased in people with CS. Currently it is recommended that people with CS have colonoscopy every 10 years beginning at age 50 like anyone in the general population. However, these recommendations could change and it is important to ask your doctor or genetic counselor about the most current guidelines.
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