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newly diagnosed pNET on tail of pancreas

Neuroendocrine Tumors (NETs) | Last Active: May 27 10:35am | Replies (6)

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@retiredinkazoo

Thanks for your post. Can you tell me how old your wife is please? I had the same diagnosis. pNET on tail of pancreas with too numerous to count liver metastasis. I am age 77. Both my Mayo Clinic oncologist and my university of Michigan cancer Center oncologist recommended only lanreotide injections which I have been getting since early August 2023. So far no progression of cancer, but no reduction either. Both oncologists say we can try CAP/TEM and/or PRRT later if The cancer starts to spread again, but they say I am likely to die of something other than my NETs. I suspect my age is why they have taken this approach. That is why I am asking your wife’s age. Thanks.

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Replies to "Thanks for your post. Can you tell me how old your wife is please? I had..."

Hi! It’s actually me that has the diagnosis and I’m 41 yrs old. I really don’t have much information about my situation other than it being on the tail of my pancreas and its 2.6cm in size.

@retiredinkazoo - I have similar case - huge pNet on the tail ( 20x16 cm) plus endometrial cancer. Diagnosed at 62yo. Had surgery for distal pancreatectomy, spleen, gallbladder removal, liver debulking and total hysterectomy. I have also been on lanreotide (120 mg) for 14 mo now; CT scans every 3 months showed no further progression (for now). I am having my nect CT tomorrow. My oncologist feels that in my case lanreotide is the first 'line of defense' and if we see progression will go to other treatments (CAP/TEM or Luthatera) which are available in Syracuse where I live, luckily! Keep your faith and we are all in this together!