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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@beech18bob

Hi @sderose, thanks for the like and hug. It wasn’t that I was trying to avoid the Octreotide injections rather I decided I wanted a second opinion before beginning them, based on: first, from what I was reading on this NET Group, I didn’t seem to have the typical NET metastatic symptoms (night sweats, diarrhea, etc); second, I was a prostate cancer support group leader for 12 years and always urged newly diagnosed guys to get a second opinion as to treatment methods and third, I was a caregiver for my wife as she fought cancer and learned to always question and be very involved. My upstate NY cancer center assigns an RN Navigator to each patient (very helpful) and she had already determined that the combination of Medicare and my secondary health insurance (Hartford Life) would pay for the Octreotide treatments, although they were not going to be three / day rather once a week, I believe. I’m still symptom free, thank goodness.

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Replies to "Hi @sderose, thanks for the like and hug. It wasn’t that I was trying to avoid..."

Very interested in your second opinion that indicated you did not need the Octreotide injections. I have non-functioning neuroendocrine metastatic tumors in my liver. As non-functioning I have no symptoms. i do have a grade 2 and KI-67 0f 6-8% which I am told indicates a faster growing tumor. Mine is well differentiated which would indicate slow growing. I have had two opinions one to start Octreotide and one to watch and wait. For the doctor who said to start he was influenced by the KI-677 and grade. Trying to make an informed decision and interested in what you learned. Thanks for sharing.