FAP-related stomach polyps and total gastrectomy

dmcbud
dmcbud Member Posts: 1
edited November 2022 in Stomach Cancer #1

Hello - I am new to this board and trying to gain any insight on a medical challenge I am currently facing.

 

I have FAP (Familial Adenomatous Polyposis) that is genetic condition causing polyp growth in various organs.  Since age of 22 when initially diagnosed (I am now 58), I have been regularly screened for unusual polyp growth.  A few months ago, during a scheduled upper endoscopy, my gastroenterologist found extensive polyp growth throughout my stomach.  Multiple biopsies found some low and high grade dysplacia.  I was referred to surgeon who has recommended and scheduled a total gastrectomy on January 14, 2015.

Due to FAP, I've already had 2 major surgeries - a colectomy in 1978 (age 22) and Whipple Procedure to remove duodenum and part of stomach and pancreas in 2011 (age 55).   Both surgeries required considerable patience for recovery - especially the Whipple that required 5 weeks in hospital due to a variety of infections/complications.   Fortunately, I am now very healthy with very little restrictions.  I am VERY grateful to be health and, at least yet, never had cancer.   During the last 35 years, screening and risk-management has been pivotal in my life.

Certainly the colectomy (virtual certainty to become cancer by age 35-40 for FAP) and Whipple (known risk of duodenum polyps) were fairly straighforward surgical decisions.

However, stomach polyps are more unexpected in FAP (and even less likely to evolve into cancer).  WHile my surgeon is planning on the gastrectomy route, she admits that there are many "gray" areas with my condition.  If I was older and in poorer health, she indicated that she would probably be more wary of surgery due to initial operative risks and the aftereffects.

I am presenlty planning on the surgery.  However, I get the impression from my surgeon that it is uncertain if stomach cancer is necessarily inevitable for me (and if so the time frame).  She has indicated that one could choose a path of no surgery with further screenings.........but what is strategy? wait for cancer and then hope it hasn't spread and is treatable (along with likely chemo/radiation).

Just hoping that there may be someone out there that may have faced any similar decisions that might help me make the best decision and feel committed to it.

Secondly, I'm wondering what prognosis if for someone to have total gastrectomy who already has had his colon, duodenum, etc removed.

 

Thanks to all and wishing you good health for the holidays.  It's the best gift one can receive!

 

 

Comments

  • eeyorelove75
    eeyorelove75 Member Posts: 2
    #2
    was told i need the total stomach removal

    hello, my name is cathy and i'm not a spam. i know what your going through. it seems like if its not one thing its another. it never stops. its always something with the fap. i knew i had the disease and all. i knew i needed to loose weight and all. my weight doctor said you need to talk tot he drs at barnes i cant touch you for the sleeve. you have poylps that are the biggest they can be. well, i guess im am going to have the total done. i did have most of the large int. removed because of the fap. i'm 40 and i found the disease when i was 20. this disease ended my marriage because  he didnt want to deal with me. he took my kids and put me in a nursing home after i took a medical bus home. i came home to no support just me. now i am married and i have big time supporter.

  • Wisconsin
    Wisconsin Member Posts: 1
    edited December 2017 #3
    Gastrectomy

    dmcbud,

    sorry this is such a delayed response, but I just joined the group and read your post.  I am currently facing the same situation you were in your post.  I’ve had a total colectomy in 1984, then a Whipple in 2004, now possible gastrectomy due to carpeted polyps with dysphasia.  I’m wondering if you had the surger, how are you doing?

  • cstiller
    cstiller Member Posts: 9
    #4
    FAP stomach covered in adenoma polyps

    I too was diagnosed with FAP, diagnosis given July 2009, s/p colectomy 9/2009, reconnect j-pouch 3/2010, whipple 6/26/2013.  May of 2020 went for EGD everything was free of polyps, August 2020 went for EGD/EUS everything was fine negative for polyps, October 2020 went for EUS/ERCP found many funding gland polyps in my stomach the doctor did not biopsy said "they are normal for FAP they are benign no need to biopsy or remove."  I went for annual EGD 8/4 found that my entire stomach is covered in polyps, many biopsies were taken.  The pathology report states they are adenomas.  My GI doctor said I need total gastrectomy.  I'm 36 years old a mom of an amazing 13 going on 30 year old son and I have an amazing husband.  I am looking for pointer as I now have a consult at Cleveland Clinic in October to see if I have any options as the polyps are not cancer yet.  I am scared and I really do not want my stomach taken out.  

  • JenniferLouise
    JenniferLouise Member Posts: 2 *
    #5

    Did either of you under go surgery to remove whole stomachs? If so are you on tpn? / how are you coping? Can you eat or drink anything? Even if just to taste and of no nutritional value

    I'm 42 and live in UK

    Background: 1990 colon/rectum removed age 10 (internal s pouch formed from some ileum)

    2006 - vertical c section

    2012 s pouch and anus removed (pouch filled with 300+ tubuarvilious adenoma polyps some high grade dysplasia some low. Given permanent ileostomy.

    2018 pancreas preserving whipple (retained all stomach as surgeons decided to cut adenoma polyps away instead to let me retain it as long as possible. Gallbladder also removed). Scattered adenoma polyps in jejunum but small in size so this was connected to stomach once duodenum removed.

    14th Oct 2022 surgery to remove adenoma polyps from outside stoma and large one inside causing obstructions. 1st 20cm of ileum scoped through stoma heavily carpeted with adenoma polyps but they are more scattered after that. stomach completely full and carpeted with both fundic gland polyps and adenoma polyps (high grade dysplasia some low grade).

    Nov 2022 surgeons currently deciding what to do, it's looking like total gastrectomy and possibly removal of all remaining small bowel (unless they let me keep bits of jejunum and remaining ileum with the least polyps and attach those to oesophagus, create new stoma and just regularly scope everything.

    With myself it seems when they remove bowel with adenomas they just reform and spread to a new location (that seems to have happened when duodenum removed adenoma polyps just formed on and around stoma area and through that section of bowel)

    Added complication is my uterus has hyperplasia (biopsies taken aug 2022) also have 11cm cyst on ovary and 5cm one on other ovary and scan shows desmoid or adhesions (from all the surgery I've had) stuck between cysts and bladder so surgeons need to decide what to do with that and whether to remove at same time as stomach.

    Jennifer

Discussion Boards