Welcome to the NETs Group! Come say hi.

Thanks again. Can you help with University of Michigan hospital link or email or phone or contact.

Hello at hopeful33250, I am the patient. I was diagnosed in 2018/19 though I had known about this tumor for about 2 decades. Possibly existed longer than that. After metastasis, NET damaged my bones.. Though I have shrinked my tumor by about 50% now. My damaged bones is my greatest priority but the existence of the tumor is still a threat. Can you help me with Michigan hospital contact. I need medical help/care.

Hello @netpatient and welcome to Mayo Clinic Connect. I am happy to have you posting in our NET discussion. Have you personally been diagnosed with NETs or perhaps a family member?

At the University of Michigan, there are doctors who perform surgery, I'm sure if you called them you could find a surgeon or an oncologist for treatment of metastasis.

As you just started posting, please feel free to share more information, as you feel comfortable doing so. Would you share about your history with NETs and how you are feeling?

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.