What’s next: Seeking advice on how to navigate diagnosis appointments?

Hello @phoebeghostwriter

I'm glad to hear that you are getting some other opinions, that is great! The questions you asked about Serotonin are ones that can best be answered by a physician. As you know, Connect is a patient support group and we are not medical professionals.

I hope that you get a greater understanding of your problem at MD Anderson Center today. I look forward to hearing from you again.

Will you post again and let me know what you find out?

@phoebeghostwriter, did you learn anything at your recent appointment? How are you doing?

The appointment with the endocrinologist is for pituitary which is what got me in door because of a possible mircoandenoma. However even with my serotonin high she is only allowed to run my serotonin again and will do chrome G I think. So I’m staying until Tuesday to do another Urine test. They did another scan of my pituitary which I am awaiting results. But if that checks out ok then back to square one. She said she would have to refer me to another department for NET but I’m so confused because diagnostics seem so segmented but endocrinologists don’t diagnose NET tumors. They didn’t seem to comment on the 381 serotonin level. I did have a recent scan that showed a thickening of small bowel. I don’t know how to make things move quicker. I need different blood tests and real imaging. Im scheduled for Mayo Feb 16. Hopefully they can move things along. I don’t know how to advocate further and I know time is important.

Allow me to tag some fellow NETs members to help you prepare questions for your upcoming Mayo appointment, members like @hopeful33250 @amandafl @remi @jhilbish @cvb @lenorahaston @captain1950 @astaingegerdm

@phoebeghostwriter what questions are you planning to ask?

I guess before I calibrate my questions - what can I expect from internal medicine on my visit? I’ve hoped for more imaging for a month and I’m hoping Mayo will do so. So, I’d love to hear from others about their experiences with Mayo regarding a NET - did they have a diagnosis first or did Mayo help them pinpoint the location? Anyone have both pituitary and NET symptoms? Thank you!!

@phoebeghostwriter @remi @jhilbish @cvb @lenorahaston @captain1950 @khauert @tomewilson @alphanumeric @gulzar @megansims @netpatient @kate12345 @amd12 @tatteesmom3 @elm60

I would encourage everyone with a NETs diagnosis to join us in the following NETs support group originating from the Mayo facility in Jacksonville, FL. Here is the information. I do encourage you to register soon. This Zoom meeting is limited to 50 participants and last month there were 40 people registered.

This will be your opportunity to ASK the oncologist all of those questions that you would like answered.

Neuroendocrine Cancer Support Group

Thursday, February 3, 2022; 6 to 7:30 p.m. EST (note time change)
(4 to 5:30 p.m. MST)

Topic: Round Table Discussion
with Dr. Mohamad Bassam Sonbol, M.D.
Oncology Mayo Clinic, Arizona

Location: Virtual (Zoom)

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

Hello @phoebeghostwriter

I understand your disappointment that MD Anderson Cancer Center has not fulfilled your hope for a diagnosis. You are right, an endocrinologist is not the right specialist to diagnose NETs. Perhaps the pituitary scan will provide some more information.

I would like to invite @jhilbish to this discussion as her husband has had surgery to remove his pituitary. Also, @captain1950 @khauert may have some information for you.

We have several members who have been treated for NETs at Mayo, including @amandafl, @tomewilson, and @emmiel14.

I know that you are very anxious to get answers, @phoebeghostwriter, but I would encourage you, as much as is possible to try and relax and let the answer to this problem unfold in its own time.

This Thursday, there will be a NETs support group meeting. I really hope you can attend. You will be able to ask a Mayo oncologist your questions.

Thank you! How do I log on Thursday?

I totally agree with Teresa - take a step back, relax and allow the process to find a diagnosis develop systematically.
I fully understand your feeling of urgency to find an answer and to know what’s in your future.
You are going to the best possible medical center for evaluation and treatment.
I was there a few times for testing before a final diagnosis- not for NET- but there was always trying new approaches and always easy to communicate in between visits.
Hope you have a good visit!

@phoebeghostwriter You will need to register first (see the post above). Once you register, Michelle Walsh will email you the link to log on.

I'll copy the registration info here, but if you read the post above it will give you more info.

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.