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familial adenomatous polyposis (FAP)
Hi Everyone,
My 29 year old husband just got diagnosed with Familial Adenomatous Polyposis, otherwise known as FAP. This basically means that he has thousands of Pre-cancerous polyps in his colon, rectum, and also stomach. Though he has no cancer now, we're told that his chances of colon cancer is 100% and that he will likely need a Colectomy surgery done before the end of this year before this thing turns cancerous. We live in Hawaii and the doctors here are telling us that we would be better served to go to a major hospital (like Mayo clinic, Cleveland clinic, Johns Hopkins).
It's a little overwhelming trying to "shop" for a surgeon that is familiar with patients with FAP and has completed surgeries of this kind...any suggestions?
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Hi Sotia,
My sister was diagnosed with FAP, she had colectomy at age 35, then it develop into cancer and passed at age 52. She has 3 children, 2 of whom was also diagnosed with FAP, one already passed. The surviving son has colectomy 12 years ago , but on his latest follow up endoscopy ( 2/23 ) a number of polyps is seen around his doudenum. I wonder if there is any new treatment available like gene therapy or chemoprevention that you are aware of, any trials maybe at Mayo Clinic ? Appreciate your help very much.
Jane
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2 Reactions@mjaramburo, I'm sorry for the losses your family has experienced due to FAP.
According to Mayo's website https://www.mayoclinic.org/diseases-conditions/familial-adenomatous-polyposis/diagnosis-treatment/drc-20372446
Potential future treatments
Researchers continue to evaluate additional treatments for FAP. In particular, the use of pain relievers such as aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs), as well as a chemotherapy drug, are being investigated.
To find out if there are current FAP-related clinical trials at Mayo Clinic, you can contact Mayo research at:
CANCER-RELATED CLINICAL STUDIES QUESTIONS
Phone: 855-776-0015 (toll-free)
Hello all,
My name is Tracy and was DX with AFAP (attenuated familial adenomatous polyposis) 2-3 years ago and get semi-annual to annual colonoscopies. I live in NV and my doctor advised me that there are literally no doctors here that can help me, that I will eventually will need surgery and suggested 2 years ago that I move to California and go to UCLA. My pathology has always come back fine in the actual paperwork, however, this time I was actually able to see the imaging of the polyps and one of them had a significant piece of black in it which is super concerning to me. (regardless of what the pathology says) Also, 3 of the samples stated that they may not hold up through the testing process. Does anyone know what that means? Like was the sample degraded and not tested quickly enough. I need to find some resources since my current Gastro doctor is not confident enough to help me. I am really lost on where to start.
@colleenyoung
Please help me. My name is Tracy and was DX with AFAP (attenuated familial adenomatous polyposis) 2-3 years ago and get semi-annual to annual colonoscopies. I live in NV and my doctor advised me that there are literally no doctors here that can help me, that I will eventually will need surgery and suggested 2 years ago that I move to California and go to UCLA. My pathology has always come back fine in the actual paperwork, however, this time I was actually able to see the imaging of the polyps and one of them had a significant piece of black in it which is super concerning to me. (regardless of what the pathology says) Also, 3 of the samples stated that they may not hold up through the testing process. Does anyone know what that means? Like was the sample degraded and not tested quickly enough. I need to find some resources since my current Gastro doctor is not confident enough to help me. I am really lost on where to start. I am on the waiting list to see Dr. Samadder at Mayo in Phoenix, but that is going to cost me $5000 deposit because my insurance does not cover anything. Do you have any suggestions or can you point me in a direction??
@tracy326, it sounds like you have taken the right steps to be seen by Mayo Clinic specialists in Arizona. It may be helpful to note that insurance coverage may differ at the Mayo Clinic locations. You can call Patient Account Services to find out if your insurance may cover your appointment at another location. See the contact numbers per location here: https://www.mayoclinic.org/billing-insurance/contact-us