← Return to NETs, Toilet Paper, a rant and a little humor

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@terryabk

I’d had GI issues for years, never mentioned it to doctors. I was diagnosed Lactose intolerance in College, and survived recurrent Neuro-fibrobSarcoma in my brachial plexus, which was diagnosed in 2005, even though I was diagnosed terminal in 2006. I was released by my local oncologist 8/2018. I still see my MD Anderson team, every 2 years. I just feel like a hypochondriac when I bring a health issue up. Probably partially due to 5 years of being told my pain was all in my head, prior to the sarcoma being found.

My PCP was treating me with iron infusions and concerned about my severe anemia for several years. Fall of 2018, lower right abdominal pain sent me for CT (clear) and then to Gastroenterologist. He did colonoscopy (normal), I did confide my GI issues. 4 months later, out of the blue I get a call from him. He wants to do an EDG, looking cause of the anemia. A polyp was found in the Fundus. Biopsy revealed the NET in the polyp, with no clear margins, 4/2019. The next 4 months were insane. 3 more EDGs, in an attempt to tattoo the NET area on the stomach. They were not able to ID the location, although the last one, 7/2019, did find pre-cancerous cells. Through all this testing, I’ve been diagnosed with Pernicious Anemia, chronic gastric inflammation, chronic gastritis, gastric autoimmune disorder, Barrett’s Esophagus. I experience flushing, always experience it with any bit of physical activity. My last oncology appointment at Siteman Cancer Center, St Louis, was 2/2020. I’m in a wait and see mode. My next EDG is supposed to be 7/2020, unless it gets cancelled as an “elective procedure“. After the polyp removal last April, my GI issues did lessen. However, they’ve been coming back lately. It’s been a gradual increase. My Chromogranin and Gastrin levels were quite elevated again, at my February appointment, although still lower than they were one year ago. I’m assuming the increase in symptoms means the tumor is back, which is what docs have been waiting for. They were talking of removing part of the stomach, definitely doing genetic testing on it. I had contacted my oncologist in March, following a particularly bad symptom week. He asked me to keep an eye on it, as it could be a virus. Then, COVID19 hit. I haven’t followed back up with my oncologist. I’m scared to step foot in a hospital. My sarcoma surgery (lack of reconstruction), 32 radiation treatments, 13 months of chemo, have left me a respiratory mess. I’m on oxygen and get bronchitis/pneumonia extremely easily, and have dual -chronic pleural effusions. I had a Balloon Sinu-plasti 8/2019, which has cut down my sinus infections, which always turn into bronchitis. I’m thinking I’ll just hang in here until the July EDG. The severe diarrhea is pretty sporadic right now, so I’m hoping a few more months won’t matter much. If it gets really bad, I’ll contact my doc. I know my lungs can’t handle COVID19. My right lung only has 10% functioning and for some unknown reason, the left isn’t able to compensate.

I had 85 gene genetic testing completed. No mutations and no variants were found. The genetic counselor was astonished. The only treatments I’m receiving for my new diagnosis are: B12 injections, Ranitidine, probiotics, iron supplements. I sometimes take Imodium but I try not to. I don’t drink alcohol, but have not found any dietary link to my GI symptoms.

I honestly feel pretty clueless about my situation. I’ve learned some from this forum and from online info. A LOT has changed in oncology since my prior treatment. While my sarcoma type and location were extremely rare, I guess my NET and having it in the stomach are even more rare. Lucky me. There just isn’t much info available. My oncologist at Siteman is experienced with NET, and works closely with MD Anderson. I was seen by a GI surgeon at MD Anderson 7/2019, after referral by my Sarcoma Oncologist at MDA. All the MDA GI surgeon said was, “not a candidate for surgery right now since tumor isn’t present”. I did not see a GI or NET oncologist at MDA.

So, here I sit, waiting for NET to grow back, and praying that I can avoid the Corona virus.

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Replies to "I’d had GI issues for years, never mentioned it to doctors. I was diagnosed Lactose intolerance..."

Hello @terryabk,

I appreciate your sharing more about your history with NETs. It seems that all of us who have NETs have interesting stories about our journey to a diagnosis. It just isn't a diagnosis with a clear path, but generally takes twists and turns along the way as yours did.

I have had three NETs, all in the duodenal bulb, in 2003, 2005 and 2016. The doctors were not expecting that third one to show up, but NETs are generally not typical and they don't follow the rules!

The tests that you do not mention having are the Galliuim-68 and the FDG PET scan. Perhaps you did have these? If so, did they show other NETs?
https://connect.mayoclinic.org/discussion/gallium-68/
https://connect.mayoclinic.org/discussion/fdg-pet-scan-vs-68ga-dotatate-pet-scan-for-neuroendocrine-cancer/
As you mention being seen at MD Anderson, I'm assuming that you live in Texas? Have you ever been seen by the NET experts in New Orleans or at a Mayo facility? There is a Mayo facility in Jacksonville, FL. Given your history and the fact that your current oncologist has no other treatment options for you, have you considered a second opinion at one of these locations?

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