NET symptoms despite follow-up lab work ok

Those are the EXACT symptoms I am having. My heart goes out to everyone going thru this. I tell each of my MDs that the smartest thing I ever did was to join this Mayo Clinic support group because I see that I am not alone in dealing with this rare cancer, and it is the best website for information and referrals to additional websites for neuroendocrine cancer. It really is a lonely struggle, so we do need to be proactive in our care. Thank you and God bless.

I'm going through the same with the symptoms and no answers. All the test fine except for my Gastrin level was high. I'm 74 and every day is the same waking up sweating, nausea, forceful bowel movements, vomiting and eventually fainting! Only my Cardiologist (went because they thought it was my heart) thought it was Neuroendocrine- r/o GIST. My Endocrinologist was wonderful. She did every test possible to r/o hormonal. She encourages me to keep going. GI doctor was useless. My other doctors look at me like I have 3 heads! So I made an appointment in California for the Prenuvo Scan which picks up everything. Hopefully I will get some answers. Believe me I know how you feel and how discouraging it is with the doctors. If they had the symptoms they would understand better. I feel your anguish and I pray you get some answers and relief. Just don't give up! Keep going, no matter how many doctors you have to see and how many test need to be performed. You need to be your own advocate. I will post my results from my scan which is being done October 14th. Hang in there and do the best you can. My prayers and thoughts are with you and with everyone dealing with this.

41 when first diagnosed with NETs (then referred to as carcinoid) … 60 now.

Thank you for responding.
Best wishes😊

a very young looking 72 – still work full time from home – have been having issues for many years and it was diagnosed as bad IBS – see oncologist @ Dana Farber every 6 months – lab work done in August – "Fine" just had endoscopy beginning Sept -waiting to hear, pathologist report posted 2 wks ago – looks like issues with stomach, "not cancer" still waiting for response from doctor to explain it all.
Good luck with everything you are dealing with. I just remain pro active and try to be as calm as I can be. So many other people are being told the same thing about their labs being fine but they still feel so poorly. This cancer is like a Ninja hiding in the reeds, just biding its time.

God bless.

May I know your age?

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

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. 🤗

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 🤗

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.