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Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)

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Newly diagnosed with NET - Stomach
I am a 64 year old woman. The doctor discovered the NET during an endoscopy/colonoscopy. It was not recognized as an NET during the procedure. It was only after labs had come back that it was discovered. I don’t know much about it yet, but I’m going to Mayo in a week for more testing. They have not scheduled surgery so I am assuming it must be small and hasn’t metastasized at this point. Nonetheless, I am a little nervous. I’ll be traveling from western South Dakota by myself. Has anyone else faced this alone? And do you think I will have problems getting around the Mayo Campus? I am also disabled and unable to walk long distances.

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Replies to "Newly diagnosed with NET - Stomach I am a 64 year old woman. The doctor discovered..."

@katballoo, welcome. I moved your message to this discussion:
- Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

I did this so you can easily meet other members of the NETs support group, including those who have GI NETs or NETs of the stomach like @hopeful33250, @kathryncd @margaret12 @wdd18054 @lupitaromero @pavlina60 @harley4650 and more.

You also mentioned that you will be traveling to Mayo Clinic, Rochester on your own. You will find many useful discussions to help you plan your trip in the Visiting Mayo Clinic support group (https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/).

See these helpful discussions in particular:
- First visit to Mayo and traveling alone: Winter advice? https://connect.mayoclinic.org/discussion/first-visit-to-mayo-and-traveling-alone-winter-advice/ (although you won't need winter advice 🙂
- First Visit to Mayo Clinic: How do appointments work? What to expect? https://connect.mayoclinic.org/discussion/new-internal-med-patient/
- Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors? https://connect.mayoclinic.org/discussion/has-anyone-used-mayo-clinic-in-rochester-minnesota-for-carcinoid-tumors-the/

Hello @katballoo,

I'd like to join @colleenyoung, in welcoming you to the NETs discussion on Mayo Connect. I'm glad that you found this forum. When first diagnosed with any type of cancer it is natural to feel anxious, but when the diagnosis is NETs which are a rare cancer, there is often an added sense of aloneness and/or isolation as very few people in our usual circle of family and friends have heard of this diagnosis.

My NET was also found, like yours, through a routine upper endoscopy and was found in the upper digestive tract (duodenal bulb). I had no symptoms to indicate that it was there. Many of us have had these NETs discovered incidentally, meaning that they were found but not anticipated by symptoms, etc. The biopsy is the only way most doctors know for sure that a NET exists.

I so admire your willingness to travel to Mayo. They have excellent NET specialists there and the consultation should be most helpful. The links that Colleen suggested will undoubtedly be helpful to you. There is also a Concierge service at Mayo which may be able to assist you with one-on- one assistance. Please contact the Concierge in advance of your appointment to see what services they can line up for you on the day of your appointment.

You do not mention if you were having symptoms prior to the discovery of the NET. Were there symptoms or were the endoscopies just routine check-ups?