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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Cowden syndrome


Other Names for this Disease
  • CD
  • Cowden disease
  • Cowden's disease
  • CS
  • MHAM
Related Diseases
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Treatment

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How might Cowden syndrome be treated?

Because Cowden syndrome is associated with an increased risk for certain types of cancer, management is typically focused on high-risk cancer screening. According to the National Comprehensive Cancer Network 2014, the recommended screening protocol for Cowden syndrome includes:[1]

Cancer Screening for Women
  • Breast self exams beginning at age 18
  • Clinical breast exams every 6-12 months beginning at age 25**
  • Annual mammogram and breast MRI beginning at age 30-35**
  • Annual screening for endometrial cancer with ultrasound and/or random biopsy may be considered beginning at age 30-35
  • Prophylactic surgeries may be considered as a preventative option for some forms of cancer
Cancer Screening for Men and Women
  • Annual physical examination beginning at age 18**
  • Annual thyroid ultrasound beginning at age 18**
  • Baseline colonoscopy at age 35 with follow-up every 5 years (more frequent if polyps identified)
  • Consider renal (kidney) ultrasound every 1-2 years beginning at age 40

**or individualized based on the earliest diagnosis of cancer in the family

GeneReviews offers more specific information on the treatment and management of Cowden syndrome. To access this resource, please click here.
Last updated: 3/16/2015

References
  1. Mary B. Daly, MD, PhD; Robert Pilarski, MS, CGC. Genetic/Familial High-Risk Assessment: Breast and Ovarian. National Comprehensive Cancer Network. February 2014; Accessed 3/10/2015.


GARD Video Tutorial

  • Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.

    Finding Treatment Information

Management Guidelines

  • GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.

Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Cowden syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".
Other Names for this Disease
  • CD
  • Cowden disease
  • Cowden's disease
  • CS
  • MHAM
Related Diseases
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.