NETs, Toilet Paper, a rant and a little humor

So sorry to hear of your TP and washing machine problems, @terryabk. That is a terrible combination of problems. I do appreciate your ability to see some humor in this situation, lots of folks aren't able to do that!

Carcinoid syndrome does result in a lot of diarrhea. What have you tried to control diarrhea? Do you take monthly injections?

If you are comfortable sharing more, could you provide a bit more information about your history with NET?

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.

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?

I have not had any of the specialized scans, only regular CTs. Insurance wouldn’t cooperate. They denied it based on the CT not showing anything. Which, is confusing to me as everything I’ve read says CT isn’t very good at showing NETs and my oncologist told me CTs have a very hard time showing inside the stomach. If it isn’t a reliable test, why use it to validate another type of test?

I live in Missouri, just outside of St Louis. My oncologist is at Siteman Cancer Center in St Louis. I ended up at MD Anderson for my sarcoma, after I contacted a doctor there to ask him a question after my cancer had recurred and was deemed inoperable, incurable and radiation failed to slow progression. The amazing doc invited me to be seen at MD Anderson and got me a quick appointment. My local sarcoma oncologist and my MDA sarcoma oncologist worked together, but my chemo treatments were done locally. When the NET was diagnosed, I immediately reached out to both sarcoma oncologists, who hooked me up with my local NET oncologist at Siteman, and the GI oncology department at MDA, where I only met with an oncology-surgeon.

I have wondered about possibly seeking a third opinion. With 2 oncologists telling me there isn’t anything they can do for me until the NET grows back, I feel a bit in the dark. I asked if I should be seeing an endocrinologist or any other doc with all of my most recent diagnosis, and although I was highly encouraged to seek additional oncology opinions, I was told there was no need for me to see another specialist other than the gastroenterologist. I was given all the other diagnosis but I really have no info on what they mean other than I need the B12 injections.

To complicate matters further, a month after my NET diagnosis, my wonderful PCP, took a medical hiatus with a plan to switch to a new medical group, so I lost him as a resource as well, but planned to follow him to his new practice. Then, his plans fell through and he ended up moving to the other side of the state and opening a practice in his hometown. My new PCP hasn’t been much help as far as info either, just giving me a couple NET sites to refer to, both of which I had already found. She offered me nothing on the other diagnosis. I’m not sure if I’m going to stay with her, but I’ve only seen her once and I’m not ready to move on just yet.

I’ll keep in mind the possibility of another opinion at Mayo. However, with this virus issue, I’m terrified of stepping foot in a hospital and getting exposed. The outcome would not be good, due to my other health issues. At that point, the NET wouldn’t matter either, I guess.

Are there treatment options available that I’m not being offered? I think part of the problem is the lack of info on my NET tumor. The gastroenterologist that found the NET, is with a small hospital, close to my home and is in a different medical group than my Siteman. (I have switched to one that is the same network as Siteman) The only tissue my oncologist has had to work with is the slides that were already stained by the original pathologist. My oncologist really wants (needs?) more info regarding my tumor, but has no way to access it until the tumor re-grows and he can get tissue samples. The initial pathology suggested that my NET was type 3. However, my local oncologist, pathologists at Siteman and MDA, and the surgeon at MDA all feel it is actually type 1. Given the lack of specimens at this point in time, I’m not sure if any other oncologist could offer me other options.
It’s all so complicated and confusing.

Hello @terryabk,

Your situation does sound complicated, however, I think an appointment for a second opinion at Mayo in Rochester, Minnesota might be helpful. There is a NET specialist there. Dr. Thor Halfdanarson, who is one of the best in the country. Here is a talk he gave about NETs,

Thank you.

Do you know if tele-appointments are available? It’s very unsafe for me to travel right now.

@terryabk

Angie, Here is the information for contacting Mayo for appointments, http://mayocl.in/1mtmR63. You would need to call them to ask that question. It might be good to go after the COVID-19 situation settles down, but call and see what they have to say.

Thank you

@terryabk Your welcome, Angie. Post your questions or concerns at any time!