What's next after SiNETS?

I feel for you, waiting is the worst! Nothing worse than having a medical Dr that won’t listen! Did they refer you to a NETS Specialist/Surgeon? It’s so important to find a NETS Dr & team so you have the best care. Redness in the face sounds like classic flushing; the monthly injections are supposed to help control that. I hope you hear back soon!

Hi,
Yes she is a GI oncologist surgeon...she specializes in NETS.
Thanks for the thoughts. I hope you are also well.

Hello, good afternoon. First of all, I'm sorry you're going through this. My wife had a pancreatic NET. After two years of reading everything, I understand that the only cure is tumor removal, so if that's possible, I think it would be best. With this type of disease, you have to be proactive; sometimes doctors don't pay much attention. I recommend you read up on this disease, but from reliable sources. There are many travelers here who can guide you on where to read. I wish you the best of luck.

Awe, thank you so much. I called the surgeon and left a message...lol
All the best to your wife and you

Hi
I agree with this "wait" approach as well. My husband was diagnosed last year with grade 1, stage 4 (liver metastasis). He is stable on once a month Lanreotide shot. We have tried to educate ourselves and seeked multiple opinions from NET specialists. NETs are very much a marathon not a sprint, and rushing to do surgery may not necessarily lead to the cure you are hoping for. It is not uncommon to have NETs be present in your body that are below detection levels, but can then grow slowly over years. Of course surgery may be a good option in your particular situation, especially if you are having symptoms.
Please seek multiple opinions before deciding.

Yes, thanks for you reply. They think they caught it early. But I am very symptomatic. Today is a particularly bad. I never rush into things. I've been at this 2 yrs, perhaps longer. I'm tired of guessing and wondering. I'm so relieved we finally found it, but you are right. Its not an easy decision. I know these tumors don't travel alone. My oncologist did say that there could be more, too small to see.
Still waiting by the phone for the call from surgeon. Best wishes to your husband

Each NETS case is unique; some have symptoms & some don’t. In my case surgery was necessary, every time I ate or drank something within an hour I would vomit. Surgeon ended up removing 22” of small bowel, lymph nodes & surrounding tissue, pathology confirmed NETS. Photo is attached.

Omg...how big was your tumor? Mine is small. Only 9mm. But it is mighty. I struggle with nausea, vomiting, diarrhea.
How are you feeling after your surgery?

I’ve attached the pathology report.

This surgery happened in 2022, I feel great!