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Just diagnosed: Metastatic NETs. Treatment?

Neuroendocrine Tumors (NETs) | Last Active: May 13, 2023 | Replies (53)
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@hopeful33250

@helloitsme

Welcome to Mayo Connect. I certainly can understand your feelings with this rare diagnosis. All of us with a diagnosis of NETs have had similar feelings! You were so wise to insist on a PET scan. I commend you for being proactive and not simply accepting the results of the CT scan. Many of us with NETs, like you, have zero symptoms. I have had three surgeries for NETs (over a 20-year period) and never had symptoms.

I am glad to hear that you have an appointment at Mayo soon. It is so important to have a consult with a NET specialist. General oncologists often do not have the training and information on treating NETs.

I would encourage you to meet some of the other members of the NETs discussion group. Here you will see many patients, like yourself, you are learning about their diagnosis and supporting each other.

--Welcome to Our New Group
https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

As your Mayo appointment is coming up next week, do you have a list of questions to ask the doctor?

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Replies to "@helloitsme Welcome to Mayo Connect. I certainly can understand your feelings with this rare diagnosis. All..."
helloitsme | @helloitsme | Apr 28, 2023

Thank you so much for replying, I feel better already after hearing about your experience. I was feeling so all alone and scared. Yes, I have a long list of questions written down and I'm hoping not to drive the Dr. crazy with all of them! I'm sorry that you have had to experience this horrible disease, but am extremely happy that you have done so well with your treatments. You have given me hope. Thank you from the bottom of my heart.

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