NET symptoms despite follow-up lab work ok

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.

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.

I agree with other comments you need to respectfully push your care team for possible treatments that will help you have a better quality of life. All of my lab work (blood and urine) was always fine when I had a NET on the head of my Pancreas. My symptoms started in 2006, wasn’t diagnosed correctly until 2012 as all my lab work was always normal. The only reason I was diagnosed is due to a family member who is a Dr. said I needed to ask my GP to send me for a CT scan. My NET showed on both CT and MRI but it also didn’t light up on Ga-68 PET scan. NET was confirmed with biopsy after it was removed. My symptoms first started with diarrhea so I was diagnosed with IBS, after three years my symptoms progressed to include nausea, balance issues, extreme fatigue, anxiety (which I never had any anxiety ever before), neuropathy, I didn’t get headaches until 2018. I had surgery in 2019 to remove the primary NET from my pancreas and two tumors from my liver. All of my symptoms were gone after surgery and have not returned. The anesthesiologist said my tumor was functioning during the surgery, so I don’t know why my lab work always came back normal. I think a lot of times Dr.s don’t realize how bad the diarrhea is, I know for me it impacted my whole life for over 10 years. Hopefully you will find something that will help you.

I was interested in peoples' stories if anyone else had similar experiences in being ill, but not having any test results to substantiate their symptoms. In January, I told my oncologist that I thought it would be wise for me to pursue consults with various doctors in different fields to explore the possibility that my symptoms are related to something other than NET. So far my lab work has been fine and the feeling is that my symptoms are related to the NET. I am sorry for what you had to experience, and for years of misdiagnosis. I tell my doctors that I need to be proactive in my care, but I think I need to be less polite and more aggressive in requesting more testing. Thank you so much for sharing your story.

You’ve received valuable comments and suggestions on how to live with our NETS.
I’ll add that I would re-evaluate every part of my diet to assure all that I am eating small meals, avoiding all offenders on the Carcinoid Diet and my daily fluid intake is up to the recommended level.
Ask doc how often you can take Imodium, Peoria Bismol, etc.
Above all keep thinking positive and resist the ever-present anxiety! Best to you…

Thank you so much for your suggestions. I had colon surgery more than 20 years ago for a bowel obstruction - since then I have not taken any anti-diarrheal products - prior to the surgery, I was taking large dosages of "Imodium AD" daily per a doctor's advice & l always wondered if that was a contributing factor to the obstruction. When I am having a bad episode, I will take extra probiotics, and stick to a clear diet. In 2018, a wonderful gastroenterologist spent time with me suggesting no gluten, no diary, nothing gassy, no carbonated drinks, no soy, I had already given up alcohol, she suggested probiotics daily, I am on 0meprazole for Gerds/Acid Reflux (I'm really not a fan of this drug) she also suggested dairy free yogurt, no fruit juice, & eating small meals , watch the sugar & salt intake. NET organizations provide many lists of foods to avoid as well as providing a list of foods that are acceptable. Foods that I always considered healthy are not so for NET patients. It is a question of making the decision to stick to nutrition that will not make us sick.
I appreciate your comments, you bring up excellent points stressing diet and hydration, thank you so much for taking the time to share.

Pippa05, I am so very sorry to hear about your struggles. And I appreciate and can identify with your frustrations. I was diagnosed in 2018 with an intestinal NET when I had a blockage in my small intestine. They removed 10” then, and 11” of my large intestine in 2019. I had been very sick since 2007, with multiple diagnoses (IBS, Crohns Disease, etc) but no tumors ever showed up on multiple CTs, colonoscopies, endoscopies. I never had a Chromogranin A test (until after my first surgery), and only one HIAA 24 hour urine test - which was slightly elevated but no one pursued that.
Treatment has been Sandostatin injections every 28 days and PRRT treatment in Mayo in 2021. I have labs and see my oncologist every 3 months. I’ve had 3 oncologists over these 5 years and they’ve all said the CgA test is not the most reliable, but that and the HIAA test (more reliable) are the best they have these days. My first oncologist (who retired!) would always say, “Regardless of what your tests say, how do you FEEL?” Obviously you feel terrible and these issues have greatly impacted your life. My tumors only show up on a GA Dotatate PT scan. The injections pretty much control the symptoms, and I recently changed doctors because mine was no longer listening to me and found one who has a lot of experience with NETs and always has time to listen and talk to me. You need, and deserve, relief from these physical problems, which will also help alleviate your anxiety.
So, yes, please research facilities/doctors with more experience in working with NET patients and see if they will at least do a video appointment with you to start. You really need to be an advocate for yourself and/or have a family member or friend who will help you with this. This is your life and you deserve to have a better quality one. One last thought: maybe talking to a therapist about all this would help too. Good luck.

I’m so sorry you’re having all these problems! My NET was found in my cecum during a colonoscopy that I requested due to diarrhea for 1 year. My PCP kept telling me all my blood work and fecal samples showed there was nothing wrong. The NET was removed through colonoscopy/endoscopy and I had a CT scan that showed all clear, but I did not feel comfortable with that. My oncologist would not order a PET scan and said it was not needed but I begged him for days until he finally ordered it. The PET scan showed that it had spread to lymph nodes, liver and possibly heart. I will have an MRI on July 30 to see what is going on in my heart. My diarrhea has improved, but it is not completely gone. I don’t want to scare you, but please insist on a PET scan to find out what is going on, and find a NET specialist right away. I don’t think a general oncologist has the knowledge to effectively treat NETs. I will pray for you and yours to get to the bottom of this and that your symptoms will improve. Please keep us informed! Big hug 🤗

From @helloitsme:
"My oncologist would not order a PET scan and said it was not needed but I begged him for days until he finally ordered it. The PET scan showed that it had spread to lymph nodes, liver and possibly heart. "

Thank you so much for this comment, @helloitsme. It is hard to remember through all the gaslighting that we patients do actually know our own bodies best and should trust our intuition, because that trust can be the difference between life and death.

Plus, we've usually done - oh - 5 years of intensive reading on imaging studies and what works for which conditions, (in my case) how being obese affects imaging, which lab results are going to be the most effective, and - though I still have trouble believing this one, even having experienced it - how to properly interpret them.

Hang in there. Sending you positive thoughts and healing energy. 🤗

Thank you @larak...positive energy is being sent to you as well. We got this!
Positive energy and prayers sent right back to you!