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.
Thank you Teresa! You are spot on on my intension.
The Ki67 was done and found to be Ki-67 proliferation index is < 3%. (here is the full description on the report - MicroScopic Description: Immunohistochemical stains were performed to characterize the lesion. The tumor cells are positive for Synaptophysin and focally positive for CytoKeratin AE1/3C. Chromogranin stain is negative. Ki-67 proliferation index is < 3%. The mitotic count is < 2 mitoses per 2 mm2. No necrosis is present. The overall morphology and immunostaining profile support the diagnosis of well-differentiated neuroendocrine tumor, WHO grade 1 of 3. All controls show appropriate reactivity.)
Mike