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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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My husband has neuroendocrine pancreatic cancer stage four in liver as well. He's been having trouble with his sugar tanking. doc has him on 40mg steroids to control it. he also has stomach pain and he is on 15mg morhine 2x a day. He has trouble sleeping and can't stand how his face is swollen. treatment so far has been lanreotide injection, and he has had Y90 2x on liver tumors. When we first spoke to his oncologist she said this wasn't deadly. Now when we ask her any questions she just keeps saying well you have stage 4 cancer being vague when we ask if this is deadly. it has been just a little over a year since diagnosed. his endocrinologist sucks she hasn't said if there is a diet for him to control his sugar instead of having him take such high dose steroids. Is there ? thanks for listening just frustrated

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Replies to "My husband has neuroendocrine pancreatic cancer stage four in liver as well. He's been having trouble..."

I also have stage 4 Neuroendocrine in the body pancreas along with small spots on my liver. I’m going on two years of chemo treatments. I have tolerated the treatments very well and alway looking to connect with people with the same cancer. I never know what to expect with this cancer and love to hear from others. Prayers for you husband. 🙏🏻

Hello @husbandneuro5 and welcome to Mayo Connect. I am sorry to hear of the problems your husband is having with the pancreatic NETs and also as you said in your post, "vague" responses of his current oncologist.

As you know, NETs are a rare form of cancer and are best treated by an oncologist who is a NET specialist. Have you sought a consultation with a NET specialist? Mayo Clinic has NET specialists at their three campuses (Arizona, Florida and Minnesota). Here is a link for information on obtaining an appointment for a consultation (either in person or virtual).
–Appointments at Mayo Clinic
You might also consider looking at the Carcinoid Cancer Foundation (CCF) website for a specialist. Here the website for that organization,
Have you considered a second opinion from a NET specialist?