Diagnosis Frustrated: How you were diagnosed with NETs?

Very frustrating. I was diagnosed fairly early, but you still need correct treatment, and disagreement there among doctors is common too. Which is understandable with a somewhat rare disease.
And when a treatment plan is reached there can be delays waiting for medication insurance to go through. Dealing with that now - very stressful trying to communicate with the doctors and the pharmacy who tell me little or nothing, and the condition certainly isn't improving while waiting.

Has anyone had to have surgery that has carcinoid syndrome? I have a kidney stone that needs to be surgically removed. It is not in position to be blasted.

My tumors (lungs) were first noted in 2016 and as goes with NETS there is little knowledge about it. I was biopsied that year, inoperable due to location in both lower lobes. While I do not have full C Syndrome and as yet have not needed injections I have had a facial surgery that did not cause any issues. There was no up tic in symptoms. Not sure if this answers your question. Now in 2025 my Oncology MD wants another biopsy. Not sure about that.

@lkent
Can I ask how large your NETs tumors are? Why another biopsy if you were already diagnosed with NETs?

I have 50+ NETs nodules/tumors scattered across all lobes in both lungs so mine are also inoperable but I had microwave ablation to destroy the largest tumor 4 years ago and I’ll be having cryo-ablation to destroy two more in September (I want to enjoy my summer). The plan is to preserve as much healthy lung tissue as possible so we’ll only go after the tumors that start to behave differently from the rest in order to prevent the NETs from metastasizing. The nodules were first discovered in 2008 but not diagnosed until 2020.

I really don't know other than a recent chest xray indicated a small tumor on the thyroid.... since my last Pet Scan, 2 years ago, things have changed. I have an order for a new PET this month. We will go from there and I will ask more questions first.

I had a large one in my left lower lobe. Almost 2cm and they weren't sure what it was so they removed it. Biopsy of my removed lobe showed carcinoid NETS and DIPNECH. Now I have a few small 3-6mm nodules in my right lung.

I too have not found my primary tumor. Excruciatingly Symptomatic. Significant weight loss. High to very high gastrin and Chromagramin A, positive H-IAA, gastric uptake on gallium, but no hot spot, clean endoscopy except for ulcers. The frustration and second guessing in my head make me so upset. I'm on otreotide every three weeks and take three injections of fast acting otrotide every day. It helps with a lot, but symptoms still break through. The burning pain, the utterly mind bending nausea are ruining my daily life.

I just want someone to hear me.

To tell me I am not a fraud.

@rose2525: I feel your frustration! NETS primary tumors tend to be illusive and difficult to discover. In my case the primary suspicious tumor was playing “peek-a-boo” with my Gastro doc during an exploratory endoscopy to reveal a cause of my symptoms (At the jeouno-duodenum small intestine). In reflection the Gastro doc asked me if I would agree to a repeat endoscopy to “take another look at this area” - he was able to get a biopsy of this suspicious illusive area; therefore Pathologist diagnosed Carcinoid Cancer & further verified by 2nd Pathology opinion! Unfortunately, upon further investigation metastases found in the liver.
Question: Can you get a Gallium 68 PET Scan? It should reveal any Samanostatin-receptive areas of NET tumors; perhaps this will lead to a verified NET biopsy (or maybe even a surgical removal). It is good that your Oncologist has prescribed the 28 day shots that can reduce symptoms and might control tumors. You have the required lab test results… just need a biopsy to reveal the Grade, Stage & Stain Results plus perhaps further specific scans that will help determine best treatment!
Have you consulted with a Neuroendocrine Medical Oncologist? They will provide your best advice on treatments and guidance determining your decisions with the help of a Tumor Board recommendations. They can be found researching “Cancer Hospitals/University Medical Centers”. We are so fortunate when we find a NET specialist (Oncologist, Surgeon, Radiologist, Nuclear Medical Professionals). NET cancer is a rare speciality, but NET cancer is different than other cancers and each NET patient reacts differently. We need a specialist!
I believe this is NET patients most important decision! No matter that we have to travel to get the care we NEED! Best of health to you. Bette

I'm so sorry you have to go through this. As others have mentioned seeing a net specialist is very important especially considering the difficulty in locating the tumor. Mayo has specialists at all three of their locations. You can find a list of nationwide specialists at:
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Best of luck to you! I hope you find answers!

@rose2522
Did they biopsy your ulcers on endoscopy?? That was my primary