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Tips about preparing for my second opinion appointment at Mayo
Neuroendocrine Tumors (NETs) | Last Active: Jan 28 7:54am | Replies (26)Comment receiving replies
The explanation I got, is once you are stage 4, targeted therapies such as surgery and direct radiation (proton, histocripsy, Y-90, etc.) are like playing wack-a-mole. Unless there is an immediate life threatening problem that can be eliminated by surgery, it probably is not the best option. I too questioned why not surgery for about 9 years. Chemo and PRRT (Lutathera) are more effective at treating all tumors. I’m currently getting PRRT. Next treatment (2) is next week. Side effects have been far easier than Everolimus (last year) for me. I’m hoping it works well as I have lots of tumors, 50+ liver, lymph nodes and others. After 10 years of Sandostatin/Octrotide I’m doing well and feeling great. Wish you the best!
Replies to "The explanation I got, is once you are stage 4, targeted therapies such as surgery and..."
@espelandmt2 I was diagnosed with a pnet that spread to my liver and bones in 8/2022. I was told surgery was not an option. The pancreatic tumor was blocking a vein. I was pretty sick. Did 13 cycles of captem, 28 days each, and everything shrunk in half. I was no longer sick and hiking about three miles a day with our dog. I have been on a lower maintenance dose of just capecitabine ever since. Everything is still stable. I feel fortunate.
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@espelandmt2 I was also told surgery was not an option, I did complete Lutathera treatments May of last year. Tests showed no new tumors and the existing ones were shrinking..