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

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@hopeful33250

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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Replies to "Hello @terryabk, I appreciate your sharing more about your history with NETs. It seems that all..."

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.

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