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Found PNET on tail of pancreas but told it’s nonfunctional

Neuroendocrine Tumors (NETs) | Last Active: Jan 14 2:54pm | Replies (97)
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@lindabees

I’m sorry your husband is going through this. My husband was diagnosed with nonfunctional pnet 15 years ago. The pain could be caused by the tumor pressing in a nerve. Is he seeing a net specialist? I strongly recommend he do so if he isn’t already as a general onc usually isn’t qualified to handle the intricacies of this disease. Mayo has net specialists in all of their locations. We go to Phoenix. You can find a net specialist by state at the NETRF site
Under patient resources. (they won’t let me post a link but it’s NETRF dot org)
Best of luck to you and your husband

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Replies to "I’m sorry your husband is going through this. My husband was diagnosed with nonfunctional pnet 15..."
Teresa, Volunteer Mentor | @hopeful33250 | Dec 10, 2023

Hello @lindabees and welcome to the NETs support group on Mayo Connect. I appreciate your post and the encouragement you offered, especially about the importance of getting a NET specialist. Here is another link with NET specialist worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If anyone is seeking a consultation with a Mayo NET specialist, here is a link with information about a Mayo appointment, http://mayocl.in/1mtmR63

It sounds as if your husband has done well since his diagnosis of P-Net. If you are comfortable sharing more, I'm wondering what type of treatments he has had. Any surgeries or other chemotherapies? What about diabetic problems?

I look forward to hearing from you again.

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