Familial adenomatous polyposis (FAP

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Familial adenomatous polyposis (FAP

Postby StevetUK » Sun Jun 10, 2018 4:49 am

Hi Ladies and Gents

New to any medical forum please be gentle with me, I have an unidentifiable strain of Familial adenomatous polyposis (FAP) which was first identified in my brother last year, we are both in our early 50’s. Although we are both full of polyps, in fact thousands to be more accurate, we do not have cancer YET. The reason I say yet is why I am writing this post, my brother has already had his large bowel and rectum removed and the stoma he had was only temporary and has been reversed. I am on the operating table 21st June and luckily I am only having my large bowel removed as they have already cleared the dozen or so polyps from my rectum in readiness for the new join. I am not distressed in any way and am seriously optimistic regarding the remaining years of my life, I only have stepsons so no chance of passing on FAP to any offspring or grandchildren. There is plenty for me to be cheerful about but I would like to gain some feedback from anyone who has gone through similar treatment as I want to know, if after bowel removal, anyone has been diagnosed with cancer

Thanks in advance


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Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Familial adenomatous polyposis (FAP

Postby cbsmith » Mon Jun 11, 2018 6:08 am

I have FAP, the only one in my family to have it, so it was a spontaneous gene mutation. I had my entire colon and rectum removed. Unfortunately this wasn’t caught before I had cancer.

If you keep your rectum you will need to have yearly scopes to check and remove polyps as they will continue to grow there.

Also, FAP makes you more likely to have other issues and cancers, in your stomach, thyroid, etc. you will also need to have annual upper endoscopy to check the stomach and upper small intestine for polyps.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

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