1. < Neuroendocrine Tumors (NETs)

Long Time Survivor With Concerns re Metastasis

Posted by gneiss50 @gneiss50, Oct 6, 2022

I had surgery at Jacksonville Mayo 12 years ago to remove a section of my upper intestine and a pile of tumors in my abdomen. They told me that my condition was metastatic, although my pain and other symptoms "magically" disappeared. Their advice was to see a local oncologist for regular check-ups, which I did for a while. I saw the Mayo oncologist 10 years ago because I was having minor symptoms, and he told me that none of their imaging tests would show anything because remaining tumors would be too small to show up. He did say that I surely had tiny tumors remaining, because they knew they were unable to get them all. those symptoms have mostly dissipated, so I appear to be cancer free, but I know I am not.

My question is to others who have metastatic conditions but remain fairly healthy. Do you have regular blood and urine tests to check the 5-HIAA and blood markers? Is there an advantage in having these tests done occasionally? For my own peace of mind, I am thinking of going back to Mayo for a complete check-up, but am not sure they would think it is necessary. Meanwhile, I am grateful that I have not had the issues that many of you have, and I appreciate your sharing your journeys with this group

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 23 2:06pm
In reply to @hollywood817 "Another PET scan post TACE treatments is the plan. Was looking at Hopkins for another opinion..." + (show)
@hollywood817

Another PET scan post TACE treatments is the plan. Was looking at Hopkins for another opinion but will also check out link you sent for Mayo clinic. Stay well and try and enjoy the ride…nothing in life is guaranteed and I view this journey as a learning experience. In a weird way I'm excited! All the best, Tom

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I agree @hollywood817, NETs is a journey as well as a learning experience!

As you said, "nothing in life is guaranteed…" Something for us all to remember.

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tyrol123 | @tyrol123 | 4 days ago
In reply to @hopeful33250 "Hello @gneiss50 I appreciate you sharing your journey with NETs. Many of us with NETs share..." + (show)
@hopeful33250

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.?

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How old were you when you got diagnosed?
I usually hear prognosis is best for young people

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 4 days ago
In reply to @tyrol123 "How old were you when you got diagnosed? I usually hear prognosis is best for young..." + (show)
@tyrol123

How old were you when you got diagnosed?
I usually hear prognosis is best for young people

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The type of tumor has more to do with prognosis than age. Some tumors are graded as more aggressive than others.

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