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A Mother's Fight: Avoid Genetic Stomach Cancer

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Where to begin…
Last year, I found out I had a 50% risk of having GAPPS, a rare hereditary gastric cancer syndrome. Hereditary gastric cancer syndromes make up 1-3% of all stomach cancer cases. On 11/12/24, I had genetic testing done. On 12/3/24, I was informed I am positive for the mutated gene. On 1/10/25, I had my first oncology specialist consultation, and he referred me to have an upper endoscopy. On 2/18/25, I had the upper endoscopy done, and they found many polyps. I was then referred back to oncology. On 2/26/25, I received biopsy results, and I quote, “The biopsy showed that there were polyps called fundic gland polyps and that some of them had low-grade dysplasia. This means that those polyps, while currently benign, could potentially continue to progress to cancer.” On 3/6/25, I had my 2nd oncology specialist visit.
The oncologist said there are too many polyps to know for sure if they are, in fact, all benign because they are unable to remove them all and biopsy them. There are no guarantees when it comes to these things. Because of that, I’m opting to have a gastrectomy (stomach removal). If I decide to wait on the surgery, it’s EGD’s every 6 months, oncology appointments, and if it does become cancerous, it’d be the aforementioned surgery AND chemo.
I believe waiting would also affect my mental health. With already having anxiety, I know my mind would jump to the worst-case scenario every time I get an upset stomach, gassy, etc. It would be like an annoying itch in the back of my mind.
I’ve done lots of thinking about what’s best for myself physically and mentally, along with, I hate it’s a factor, but also what’s less likely to financially ruin my family.
EGD’s cost $4000-$5000 per procedure (do the math if you wish), and oncology appointments are approx. $300 per visit. He would want to see me every 3-6 months.
I know gastrectomy comes with its own challenges, but I have an amazing support system and one heck of a stubborn streak! With the combination of the two, I’m hopeful I’ll find a new normal within a year or two.
If I had only myself to think of, I probably wouldn’t even be making this. I tend to be the kind to suffer in silence, and I REALLY do not like attention on me! However, it’s going to be expensive, and I can’t risk the kids (I suppose the husband too) losing the house or anything because of me. Yes, we do have insurance through Bruce’s job, but we pay like $200 every 2 weeks (26 times a year). We have a $5000 deductible, and if we meet that, we are still responsible for 30%. I know it’s not a great plan, but it’s the only one they offer. So, I’m here to ask friends and family to help in any way they can, whether that be donations, shares, and/or prayers!
If you have questions, ask away. However, if you are a do-your-own-research type, make sure you’re reading about someone with Gastric adenocarcinoma and proximal polyposis of the stomach. I won’t name names, but a few have said, “Oh, stomach polyps are pretty common,” to which I had to reply, “But did you read about ‘normal’ people because I’m far from normal”
Thank you for taking the time to read this. Believe me, I know it’s A LOT! Wish me luck, we love y’all!
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    Co-organizers (2)

    Chrystina Smith
    Organizer
    Dresser, WI
    Carla Rousu
    Co-organizer
    Diane Anderson
    Co-organizer

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