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.