Looking for info on GAPPS mutation for Stomach Cancer

Posted by sarahinoz @sarahinoz, Feb 22 1:58pm

I was recently made aware of a family history of a genetic mutation for stomach cancer called GAAPS (APC gene mutation). I'm curious if anyone is this forum has GAAPS or any info on it.

There is a prophylactic recommendation to do a complete gastrectomy - I'd love to get any info I can on what life is like w/o a stomach. I'm in my late 40's and would like to continue will my currently quality of life and unsure if that is still possible - I'd like to remain active (hiking, mtn biking, etc).

Interested in more discussions like this? Go to the Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 26 4:31pm

Hi @sarahinoz, I believe you are referring to gastric adenocarcinoma and proximal polyposis of the stomach (GAPPS) is a rare variant of familial adenomatous polyposis (FAP). Correct?

While not related to gastric cancer prevention due to FAP, here are two discussions where members are talking about what it is like to have a gastrectomy:
- Anyone familiar with a Gastrectomy (total stomach removal)?
https://connect.mayoclinic.org/discussion/gastrectomy-1/
- Total Gastrectomy for stomach cancer: What can I expect?
https://connect.mayoclinic.org/discussion/total-gastrectomy/
It's not an easy decision to undergo major surgery as a cancer prevention. Are you consulting with a genetic counselor? Are they able to provide information about your relative risk of developing cancer?

biillgraves | @biillgraves | Nov 9 6:58pm

I have GAPPS. I'm 65.

Diagnosed in 2022. Still have my stomach.

We are very rare.

Colleen Young, Connect Director | @colleenyoung | 1 day ago

In reply to @biillgraves "I have GAPPS. I'm 65. Diagnosed in 2022. Still have my stomach. We are very rare." + (show)

Welcome, @biillgraves. I'm sure @sarahinoz will appreciate hearing from someone else living with gastric adenocarcinoma and proximal polyposis of the stomach (GAPPS).

Bill, what treatment, if any, have you had?

biillgraves | @biillgraves | 22 hours ago

Visually my stomach is a mess but it works like a champ. Too many polyps to count in the fundic and body of the stomach. Barrett's esophagus in the upper part.

I don't know of any treatments other than gastrectomy. I knew the family has had some type of genetic cancer challenge for 20 years. It was obvious. I went looking and found GAPPS in May 2022. I have had 7 endoscopies and over 100 biopsies since 2005. Extensive blood tests since 2012. Eat and live a cancer prevention life style. At this point GAPPS has actually made me better. I am as healthy as I have ever been. The gastric cancer risk (GAPPS) has driven life style and diet changes that have had extraordinary results.

GAPPS is a tough challenge because doctors have not had any experience with it. The family currently has a 34 year with GAPPS with terminal gastric cancer. We have family members that are 65, 73, 75 and 77 that have GAPPS and at this point there is not indication any of them have gastric cancer. Nobody in our family has lived more than 9 months after an actual gastric cancer finding. The people who have gotten cancer in our family did not lead the heathiest of lifestyles. The people that have not died lead much healthier life styles.

I am working with No Stomach for Cancer (non profit) to develop a set of best management practices for individuals that choose surveillance. I have a written plan that I developed and followed a decade ago. GAPPS has allowed me to interact with medical professionals world wide. GAPPS has helped me refine the surveillance plan but my doctors still think the stomach should have come out 2 years ago when GAPPS was found. They were setting up the removal the next day. Wow horsey.

I have involved the following in my Surveillance effort;
1) NIH/NCI
2) The Mayo Clinic
3) Memorial Kettering Sloane Cancer Center
4) John Hopkins
5) National Cancer Center in Tokyo Japan
6) Northwestern University

Surveillance is a tough decision. Quality endoscopy's are difficult to find. Insurance only pays for 2-3 minutes in your stomach. NIH spent 30 to 40 min in mine. The are recommending endoscopies every 6 months for the rest of my life.

I am 65. knew I was a gastric cancer high risk person for 20 years. I'm comfortable with surveillance at this point but the NIH study is closing due to funding. Part of contacting the above is to find a new home for my surveillance effort.

As far as removing the stomach, there are now some resources on it. People talking from experience. Tough surgery but medically effective. I saw a you tube where 25 people were interviewed. All had CDH1 not GAPPS.
The younger the better the results, but expect problems. You like outdoor sports. Hydration seems to be a common concern. The stomach is a hold vessel for water. Most everybody seems happy with their decision after a year or so.

I have an appointment with Mayo Clinic on Jan 14, 2025 to discuss endoscopy scope and long term surveillance.

High grade dysplasia or actual cancer has never been found in my stomach. Never had an ulcer or other stomach ailment.

Outside of NIH, I am struggling to find a doctor that has even seen a GAPPS patient. I would suspect your polyps are smaller than mine at you age. Got lots of pictures and a 30 min video if you are interested in comparing your stomach to mine. I'll share anything with you.

I am currently leaning on using the FAP 2020 mutation guidance as the closest match for my continued surveillance. Unlikely to find anything on GAPPS specifically.

Happy to talk more
Bill Graves