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Living with Neuroendocrine NETS, any advice?
Neuroendocrine Tumors (NETs) | Last Active: Apr 11 12:20am | Replies (111)Comment receiving replies
has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.
Replies to "has anyone been contacted to do a research study. I think since this cancer is rare..."
Hi Sadragliz
Until recently, it was declared that NETs was rare. No longer. But please understand that those of us with NETs, will have our own experiences, hence the 'Zebra effect' (my now profile photo), so, it is important to do your studies and be assertive with your questions and follow-ups. Most physicians are overly busy these days and we have to work with them.
Good luck!
I live in Canada: aside from having a Whipple / liver debulking in October 2023 and starting monthly lanreotide injections in March of 2024, the main “treatment” that has been offered to me (repeatedly) is MAiD (a handy acronym for “medical assistance in dying”). I’m still waiting and waiting and waiting some more to hear about PRRT. I have NEVER been contacted about any clinical studies. I have stage 4 pNET which is ruthlessly advancing but I don’t even have a follow-up appointment. That is the state of healthcare in Canada SMH
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My symptoms are flushing with sweats and tremors,controlled very well by getting 40 got sandastatin every 28 days. I’m on oral chemo ( Everolimus) and Creon for the diarrhea.