NET symptoms despite follow-up lab work ok

Posted by pippa05 @pippa05, Jul 3, 2023

Has anyone experienced NET symptoms ie diarrhea, morning vomiting, nausea, headaches while lab work is all within normal range? I had net in ileum diagnosed 8/2021 which was removed by endoscopy. My lab work was fine and CT scan fine a week prior to finding NET. Every 6 mos my oncologist says "your lab work is fine" to which I reply "I wish I felt as good as my lab results" and his response is "see you in 6 mos." I had my one year endoscopy in 2022, which was fine and this year's is scheduled in Sept. I know I am lucky when I read what all of you are suffering thru. My company is allowing me to work from home because I am too sick to commute, I need immediate access to bathroom. I am not complaining, but I am curious as to whether or not anyone is experiencing the same thing? I take anti anxiety medicine because my anxiety has GI side effects, my primary doctor just increased the dosage. I've seen an assortment of doctors to determine if anything other than NET is going on, my nutrition is very good but symptoms are getting worse.
I keep all of you in my prayers, God bless.

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pippa05 | @pippa05 | Jul 3, 2023

In reply to @frankwc "I was first diagnosed with NETs in 2004 so I’ve had LOTS of lab-work done over..." + (show)

Excellent advice - and you have brought up several good points. If I don't get any resolution after Sept's tests, I will schedule a consult with a Neuroendocrine Specialist in Boston. I presently see an oncologist at a Dana Farber satellite location South of Boston, there aren't any NET specialists at that location. For years I was told it was IBS even though most of my symptoms were outside the parameters of IBS. Again, thank you so much for responding & sharing your knowledge. I am feeling hopeful.

frankwc | @frankwc | Jul 3, 2023

I was first diagnosed with NETs in 2004 so I’ve had LOTS of lab-work done over the years. Over that time, I’ve had Chromogranin A results ranging from normal while experiencing various typical Carcinoid/NET symptoms to about 15-20% above normal while experiencing no symptoms. I think everyone’s bodies are different and react differently to similar stimuli.

Gut issues are tough and can take a long time to work themselves out as functions of the missing/resected bowel are, with luck, taken over by remaining bowel. That said, you need to somehow make your primary & your oncologist listen to your issues (from your description, it sounds a bit like they’re sort of “phoning things in”. If you feel uncomfortable doing that (i.e., respectfully but forcefully confronting your care team), have a family member or friend who can be more stubborn/insistent to ask the necessary questions at your next check-up or, better yet, make an appointment sooner to address these specific problems. You shouldn’t have to spend your life 10 feet from a commode at all times and your care team needs to recognize it as the problem that it is. It’s a vital quality of life issue which should be just as important as quality of care issues.

Also, given the location of your removed NET (the ileum) you might ask your care team about adding a bile acid sequesterant to your medications. If your ileum isn’t reabsorbing the bile acids as it should, that can cause constant diarrhea. Most of these medications were first developed as cholesterol control meds which means they’ve been around for a long time, they’re well-studied, and safe to use but can be a bit challenging to schedule around other medications.