Diagnosis Difficulties

@spaztwob: Hi! I’m a NET patient too and have a suggestion.
The Gallium (or Copper) Dotatate PET scan has had best report of tumor involvement for me.
A NET Medical Oncoligy Specialist is the person who will have best scans & treatment that can lead to best tumor resolution (see Cancer Facilities, University Medical Facilities - ask for Neuroendocrine Specialists; oncoligists, endocrinologists, surgeons, etc)!
We NET patients are “special” and must be proactive in our healthcare and treatment options.
Ask your questions here and you will get honest, caring guidance from Mayo Connect NET peers who want to help. Best health to you…

Where do you live? You want to be at a teaching hospital if possible. Like Mayo, Stanford or whichever is closest to you. It’s shocking how many doctors don’t know a thing about neuroendocrine tumors or even how our metabolism works. I e it’s not just food in equals weight gain. For most it’s determined by our genes!

Hello @spaztwobe and welcome to the NETs support group. I see that @dbamos1945 and @tstern7 have already replied to you with suggestions and encouragement. You are wise to be looking for answers about this new diagnosis of DIPNECH. On Connect there are several members with DIPNECH including @californiazebra, @pattirushing and @jhhaas.

Here are links to a Connect discussions on this topic. I would encourage you to read the posts in these discussions and feel free to post questions.
---Diagnosed with DIPHECN Yesterday
https://connect.mayoclinic.org/discussion/diagnosed-with-dipnech-yesterday/
---DIPNECH DIAGNOSIS: Has anyone had radiation?
https://connect.mayoclinic.org/discussion/dipnech-diagnosis-has-anyone-had-radiation/?pg=2
---I am 75 and have carcinoid tumors in lungs
https://connect.mayoclinic.org/discussion/i-am-75-and-have-carcinoid-tumors-net-in-lungs/?pg=1#comment-1288226
It is important to obtain at least one consultation with a NET specialist in order to receive a correct diagnosis and development of a treatment plan. If you are near one of the three Mayo Clinic facilities, this would be a great place for a consultation as there are NET specialists in each of the Mayo campuses. Here is a link with appointment information, http://mayocl.in/1mtmR63.

If an appointment at Mayo Clinic is not possible, it would be good to be seen at a university medical school near you. Have the tumors in the lung been biopsied yet?

@spaztwobe
I feel your frustration. It took 12 years to correctly diagnose my lung NETs and DIPNECH after 50+ nodules were seen on my CT scan. Lots of wrong guesses. I wouldn’t agree to an open biopsy so we waited until they could do a needle biopsy. It actually took 30 years to diagnose me from the time chronic coughing, mucus and shortness of breath started. I’ve been taking octreotide injections for 4 years now and it has been life changing to control my respiratory symptoms. I am being treated by a NETs team at a teaching hospital. My local doctors were not familiar with it all especially DIPNECH. I hope your NETs team meets your needs.

Oh, I do get flushing on one side of my face all the time as well as itching on the front of my neck.

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.