Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?

Posted by mikefrancis @mikefrancis, May 24 1:56pm

I was diagnosed in ‘21 (51 y/o) with SB net and metastatic tumor in the mesentery lymph nodes. All successfully resected. The metastasis in mesentery lit up on scan, primary tumor DID NOT, they had to find by hand. Normal recovery. I’m very active and at the time had completed 30 years of clean living and exercise in the Army, which I keep up with today. I’ve always had lower abdominal pain (post surgery) which moved to a pinpoint location on right side. My bowel movements and stomach fine until last year. I began to experience, gas, bloating, extremely thin stool, incomplete evacuation, nausea daily. The follow up petscans were typical until this past October. There was slight uptake and fat stranding in the mesentery. I started lanreotide for 3 months and re-scanned and the previous spots were basically unnoticeable. Interestingly, this was the only time since original diagnosis my Chromogranin A went below 200 (49). The Drs assured me I had no cancer and thought that CgA decrease was insignificant and NOT attributed to lanreotide (?) So far upper and lower scopes clear. GI doc has flip flopped from Creon, to fiber to miralax. The answer is continuously- all symptoms I have are due to the original surgery. I’m at the end of my rope with this. I am constantly switching up techniques to cure my GI problems work full time etc. I want this fixed! Am I having a recurrence that Petscan can’t pick up? Are my hormones amiss from an unseen tumor on scan and causing these problems? Should I be concerned for hidden primary in pancreas, liver etc? Any suggestions or similar stories?

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

I have a follow up Dotatate Petscan at UAB in June. I plan on taking all the results and getting a second opinion from Duke.

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@mikefrancis

I have a follow up Dotatate Petscan at UAB in June. I plan on taking all the results and getting a second opinion from Duke.

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How about that. I go to UAB too. Small world it is. When you had your surgery, was your gallbladder also removed? A lack of gallbladder can cause similar symptoms.

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@jlsgt

How about that. I go to UAB too. Small world it is. When you had your surgery, was your gallbladder also removed? A lack of gallbladder can cause similar symptoms.

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Wow! Small world indeed! No, they did not remove my gallbladder. That seems to be operating as it is should!

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