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NET found by colonoscopy. What to expect and how should I approach

Neuroendocrine Tumors (NETs) | Last Active: Jun 26, 2023 | Replies (10)
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@mikecincy

I have my appointment set with a NET specialist at OSU James Center on July 5. Although I have many questions to ask, but what are they important that I should not miss? My understanding is that this is a one-hour consultation.
A quick recap of my case, first colonoscopy screening on May 24, 2023, and biopsy revealed that I have NET on June 2, next endoscopy with ultra sound appointment with my GI doctor on Aug 8.
Encouraged by this group, I am seeking a NEC specialist and have found there are a few options and the closest one is in Columbus OH (OSU James Center).

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Replies to "I have my appointment set with a NET specialist at OSU James Center on July 5...."
Teresa, Volunteer Mentor | @hopeful33250 | Jun 26, 2023

Hi @mikecincy,

I'm so glad to hear that you have an appointment with a NET specialist. That is great. Taking the initiative and being proactive is important in dealing with this rare disorder. From your post, I'm getting the impression that you are wanting to know what questions to ask.

Is my understanding correct?

We have lots of members with experience in meeting with NET specialists and probably can help you formulate your list of questions such as @tomrennie @dbamos1945 @fabiant @pavlina60 @vinnie694 @kim1965 @californiazebra just to name a few.

Here are some questions that I would personally want to ask at an initial meeting with a NET specialist:

I would ask about the doctor's experience in dealing with NETs. How long has he been working with NET patients, etc.

Was a Ki67 stain done on the biopsied tissue? If not, please run one. (The Ki67 stain is a specific type of examination of the biopsied tissue that give the doctor a lot of information. If this was not done when the biopsy was originally taken, it is my understanding that the new specialist can request the slides and do this type of test).

What type of treatment(s) are available for this NET?

What follow up tests would you recommend?

I'm sure that others will have more suggestions for your list of questions. These are just a few that came to mind.

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