← Return to Long Time Survivor With Concerns re Metastasis

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@gneiss50, I'm tagging other members like @carrie55 @hopeful33250 @margaret12 @avawein @harley4650 @sandy23 so they can share their follow-up protocols and testing with you.

Gneiss, have you considered contacting Mayo Clinic to inquire about getting an appointment to re-evaluate?

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Replies to "@gneiss50, I'm tagging other members like @carrie55 @hopeful33250 @margaret12 @avawein @harley4650 @sandy23 so they can share..."

Hello @gneiss50

I appreciate you sharing your journey with NETs. Many of us with NETs share a similar journey. I had my first surgery in the duodenal bulb in 2003, then again in 2005 and the last one in 2016. They have been small and so far, no metastasis but NETs is always in the back of my mind. Like you, I do function fairly well.

Since the Mayo doctors recommended regular follow-up, I would be inclined to follow their advice. Personally, I meet with a GI specialist, at a university medical center that is about a one-hour drive from where I live. Every other year I have an upper endoscopy and in the in-between years I have an MRI of the abdomen (I have pancreatic cysts) and I also have blood work to check on the Serotonin levels and the urine tests to check the 5-HIAA,

Since the last surgery in 2016, all seems to be stable, and I feel reasonably well, outside of the fatigue that you mentioned and the digestive disturbances that come with repeated surgeries of the upper digestive tract.

For your follow-up, Mayo would be a good place in that they originally worked with you. If you live a distance from Mayo, you might consider another NETs specialist. If you look on the Carcinoid Cancer Foundation (CCF) website, you will find a list of doctors who are considered NET specialists. You might find someone else who can treat you closer to home.

@gneiss50, how long has it been since your last follow-up with blood work, etc.?