Welcome to the NETs Group! Come say hi.

PET SCAN

If Dr. John Del Valle does not treat surgically, what about if NET was metastatic to other regions of the body. E.g bone Mets

Greetings from me. Glad to be a member.

AMD, As you like know, diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is an extremely rare pulmonary disorder at the benign end of the neuroendocrine cells proliferation spectrum. It falls under spectrum of of preinvasive lesions of the lungs. It is mainly seen in non-smoker middle-age females with a history of chronic cough or asthma.

I don't know if anyone else has direct experience with DIPNECH, but you may wish to also explore this discussion:
- Typical Carcinoid Tumor in Lungs https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/

I also want to invite you to the monthly NETs support group hosted on Zoom with a social worker from Mayo Clinic. All are welcome whether you're a Mayo patient or not. The next meeting is Jan 6, 2022. See details here:
- Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-108/

When are you scheduled to get the Netscan?

Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates about the state of the rest of the lung tissue before deciding what surgery makes sense. Has anyone any experience with DIPNECH? That's on the list of possibilities.

@amd12

Picking the best type of surgery is important. Do you have any follow up appointments in the near future to discuss this further or are the doctors now waiting for you to make a decision?

Teresa, I did have a PET scan of the lungs and a biopsy of the largest nodule. Both the regular doctors and carcinoid docs have seen these. Biopsy identified it as a typical carcinoid, very little activity. Thanks for sharing your experience. Both the surgery options seem similar, though the lobectomy one would use RATS and the partial lobectomy one thoroscopy. That might make a difference. The story of your friend is sobering and will weigh into my decision.

@amd, Carcinoids are rare, therefore someone who has specialized is always the very best. I had a friend who passed away a year and a half ago, who at the very end said she wished he had seen a carcinoid specialist at the very beginning.

Is the carcinoid specialist near you?

Hello @amd12

I appreciate the added information. Like you, I was confused about my carcinoid tumors and the right type of surgery. So for the first two surgeries, I had the most invasive kind. As I mentioned, my carcinoids were in the upper digestive tract, very small, and I was advised by a non-carcinoid surgeon to have invasive surgery, with exploratory work on the whole digestive tract. This involved 7 days in the hospital and a large incision to deal with in recovery.

By the time the third carcinoid was found (same location) I decided to go to a university medical school near me as I just didn't want to go through another major surgery if I could avoid it. As a result, I had outpatient surgery and went home the same day. It accomplished the same thing with less assault on my body.

At this point, you do not know what kind of carcinoid you have and whether it will return or if it releases hormones or not. Once you have the surgery, a biopsy will be done and then you will have more information.

Have any of the doctors who have seen done a Gallium 68 or PET scan of the lungs? If so, which one? The carcinoid specialist or the other one?

Carcinoids are slow-growing tumors and when found early they often will not cause metastasis. While hindsight is always the best, if I had to do it again I would go with the less invasive surgery the first time around.

This is, of course, a decision that only you can make. I look forward to hearing from you again.

Another thought-- can you say a little more about why it is important to see a specialist in this type of cancer?