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Neuroendocrine Tumor - no treatment plan method

Neuroendocrine Tumors (NETs) | Last Active: Apr 7 1:09pm | Replies (129)
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Profile picture for eesnerd @eesnerd

@dadcue
Hello Mike,
Your imaging sounds a lot like mine from several months ago. If you scan through this forum, you'll find that most of these cases are different, but it may sound a lot worse than it is. I have a couple of tumors in my abdomen with lesions on my pancreas and liver. I started monthly Octreotide injections last November, and my Serotonin and Chromogranin levels have gone from about eight times normal to near normal in that time. I've never had symptoms and still don't - my NET's were found accidentally in a cat scan looking for a hernia. Hopefully, you're in the same boat.

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Replies to "@dadcue Hello Mike, Your imaging sounds a lot like mine from several months ago. If you..."
Teresa, Volunteer Mentor | @hopeful33250 | Apr 1 9:35am

@eesnerd
I appreciate your sharing your experience with @dadcue. I also never had any symptoms. You are right when you say that everyone's case is different. A biopsy will help determine the type and aggressiveness of a NET tumor/lesion.

Since you began your monthly injections, have any follow-up scans been done?

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Mike | @dadcue | Apr 2 4:57am

@eesnerd and @hopeful33250

Thank-you both for your responses.

My Serotonin and Chromogranin A levels are only 5 times normal and I'm not symptomatic. I'm just wondering what the "first step" for treating this should be. I'm getting phone calls to make "rapid fire" appointments with an endocrinologist, a GI doctor and a surgeon all within the next month or so. My primary care doctor says all these doctors will "work together" but I think having too many doctors won't work that well together.

I don't know what the plan is or what should happen first. They say a biopsy is needed but I'm told there are several different ways of doing the biopsy. I'm also supposed to do a capsule endoscopy but that can't do the biopsy.

I'm grateful for the multidisciplinary approach but I still don't know what the "overall plan" is supposed to be. I don't think any of the doctors I'm supposed to see is a NET specialist. I would think that would be the best doctor to see first.

My understanding is the primary NET and the 2 mesenteric nodes are 'localized" so I guess that means they are operable.

I'm immunosuppressed because of multiple autoimmune conditions. I already see several doctors for my other medical conditions. One of my doctors that I already see is an endocrinologist. I don't think I need to see 2 different endocrinologists. I live where a NET specialist is available at the large University Medical Center that is adjacent to the smaller VA hospital where I get medical care. The VA hospital takes good care of me! Most of the VA doctors also work at the University.

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