Familial adenomatous polyposis


How do I find a center of excellence in familial adenomatous polyposis?

There are several cancer centers that work with individuals with familial adenomatous polyposis, which include: Beth Israel Lahey Health , The Children's Hospital of Philadelphia, Cleveland Clinic Center for Hereditary Colon Neoplasia, University of Chicago Gastrointestinal Cancer Risk and Prevention Clinic and St. Jude's Children's Research Hospital.

  • Children's Hospital. (2014, January 28). Familial Adenomatous Polyposis. Retrieved from http://www.chop.edu/conditions-diseases/familial-adenomatous-polyposis#.VnhHikorLIU.
  • Familial Adenomatous Polyposis. (n.d.). Retrieved from https://www.lahey.org/health-library/familial-adenomatous-polyposis/.
  • Familial Adenomatous Polyposis. (n.d.). Retrieved from https://www.stjude.org/disease/familial-adenomatous-polyposis.html.
  • Sanford R. Weiss, MD, Center for Hereditary Colorectal Neoplasia. (n.d.). Retrieved from http://my.clevelandclinic.org/services/digestive_diseases/departments-centers/colorectal-surgery/weiss-center-hereditary-colorectal-neoplasia.
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What specialist doctors should I see with familial adenomatous polyposis?

If I have familial adenomatous polyposis, what should my doctor know about managing the disease?

What specialist doctors should I see with familial adenomatous polyposis?

A gastroenterologist (gastrointestinal specialist) can help manage the colonoscopy and the upper endoscopy screening necessary for individuals with familial adenomatous polyposis.

An endocrinologist (doctor who specializes in diseases of endocrine, or hormone-producing, glands) can manage the thyroid screening recommended for familial adenomatous polyposis

  • Jasperson, KW & Burt RW. APC-Associated Polyposis Conditions. (1998) [Updated 2014]. In: Pagon RA, Adam MP., et al., editors. GeneReviews. [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2015. http://www.ncbi.nlm.nih.gov/books/NBK1345/
If I have familial adenomatous polyposis, what should my doctor know about managing the disease?

Your doctor should also be aware of the signs and symptoms of colon polyps. Colon polyps often do not cause any symptoms. But, some people with colon polyps may experience rectal bleeding, change in color of the stool (blood may make the stool appear black or it may have red streaks), change in bowel habits including constipation or diarrhea, pain, nausea, vomiting, or iron deficiency.

Your doctor should also be aware of the symptoms of colon cancer, which may include: a change in bowel habits including constipation, diarrhea, or narrowing of the stool, which lasts for more than a few days, feeling that you need to have a bowel movement but the feeling is not relieved by doing so, blood in the stool, rectal bleeding, cramping or abdominal pain, weakness, fatigue, and unintended weight loss.

Your doctor should be aware of the medical management guidelines for familial adenomatous polyposis found on NCCN.com which include:

  • Upper endoscopy starting at 20-25 yo, consider baseline earlier if colectomy before age 20
  • Gastric cancer: examine stomach at same time of upper endoscopy (repeat based on number of polyps)
  • Annual thyroid exam (consider ultrasound) starting in the late teenage years
  • Annual colonoscopy beginning between 10-15, every 2 years from 24-34, every 3 years from 34-44, and after 44 every 3-5 years
  • Consider adding small bowel visualization to CT or MRI for desmoids
  • Intra-abdominal desmoids: annual abdominal palpation. If family history of symptomatic desmoids, consider annual abdominal MRI or CT 1-3 years post colectomy and then every 5-10 years
  • Liver palpitation, abdominal ultrasound, and measurement of alpha-feta protein level every 3-6 months during the first 5 years of life
  • Pancreatic cancer: no screening recommendation at this time
  • Colorectal Cancer. (n.d.). Retrieved November 25, 2019, from http://www.cancer.org/cancer/colonandrectumcancer/.
  • Colon polyps. (2019, October 19). Retrieved November 25, 2019, from http://www.mayoclinic.org/diseases-conditions/colon-polyps/basics/symptoms/con-20031957.
  • http://www.nccn.org/professionals/physician_gls/pdf/genetics_colon.pdf
  • Schneider, K. (2013)., 3rd Ed.

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