After a lot of tests, scans and different doctors over the course of the last year, I recently got diagnosed with malignant insulinoma in the pancreas that has metastasized to the liver and probably the lymph nodes. It is a well differentiated G3 pancreatic NET insulinoma. The last post here I could find similar to mine (but I am new in trying to navigate this site so I could have missed a lot) was from the beginning of the year so I didn't know if people are still keeping up with that.

I had a Dotatate PET scan in June with biopsies. The main tumor is in the uncinate region of the pancreas with a Ki-67 of 15% but 24% in foci. I have "numerous hyper enhancing observations" all under 2 cm in my liver that my doctor says are too numerable to operate on, but also are "low-volume metastases". I also have "multiple enlarged lymph nodes" that indicate their involvement. I also noticed in my notes it says I have "peritoneal stranding" which he never mentioned at all, but after research seems like that's more bad cancer. I've had lots of blood work, but I have no idea what is important to look at or for because none of those results have been discussed with me and I haven't asked yet in person, but I'm really trying to put it all together.

I got referred to a NET specialist at MD Anderson in Houston a few weeks ago who lightly discussed a few therapies for me, but then strongly suggested chemotherapy and started me on Everolimus that I have currently been on for about 2 weeks. I also take dexamethasone mouthwash.

From my endocrinologist, I also take 3 daily short acting octreotide shots (my doctor was worried about the long acting one because when I take my shots my blood sugar goes down before it goes back up) and 2 daily diazoxide "servings" plus diet to help regulate my blood sugar. It is a constant battle to keep my numbers from going hypoglycemic. I have passed out a few times from low blood sugar, but luckily my family was there to give me an emergency inhaler thing and it's been a few months since that happened last. He also recently put me on Lipitor.

I was overwhelmed with the diagnosis because all the previous doctors (before MD Anderson) acted and said that it probably wasn't an insulinoma, but that if it WAS then it almost definitely was benign because they usually are. Then suddenly I saw a referral to an oncologist on my MyChart so I knew it was bad.

Because of this I probably didn't ask enough questions. I am going back for a follow-up next week and I now have a better idea of what I have and I have questions in a notebook to ask at my visit. I have only seen my NET specialist doctor one time and the rest of my questions (I send online messages because I have to travel fairly far to visit in person) that I asked have been answered by various assistants, nurses and other people on my "team". The visit with my actual doctor was short and seemed more of an introduction. I went in not knowing what was going on, but knowing what an oncologist does, to being overwhelmed with all this information and then the last thing he said was that it was non-curative and that my goal was life prolongation with quality. After reading more, I do realize there is no cure, but it was all new to me then so I admit I was definitely overwhelmed.

But in doing research I saw that many people had different therapies than I do, especially when it comes to getting surgery in removing the main tumor if it's well-differentiated, so I was wondering if anyone else has an insulinoma and what their treatments are/were?

I also found, on another place/site, that many people were disappointed with my SPECIFIC doctor for not being as thorough or aggressive in fighting this disease as they wanted. However, I don't feel like I have enough information or understanding to directly question anything.

I'm wondering if I should get a second opinion on things or if I should send my information to other places? I don't even know how I would go about doing this either.

All this is new to me. I went from not liking to even take Tylenol for headaches and only going to the hospital to have my babies to taking all these medications and scans that, even though I really try and research and read about, are hard for me to understand. But I am determined to be as knowledgeable as possible and become my own advocate for care. I have 3 young children and I definitely want to fight this as aggressively as possible. I keep a journal for questions to ask when I see him now, I'm going to take a friend with me next time so there's someone else there to listen and, if possible, I'm going to record everything. I've also started organizing my notes, test results, and other doctors and places names, different informative sites etc to try and get a better hold of all this new information. I joined some Facebook groups and have started watching some YouTube events with doctors dealing with NETs, and some videos from the Carcinoid Cancer Foundation.

I guess I'm trying to connect with others with similar situations as I have and see if I'm doing the right thing?

Thank you for reading this novel and for offering any help or information or just anything really.