Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

This is only my opinion, but I think you should postpone this surgery. You really do need a NET specialist evaluation. I believe your fear is justified, and because NETs are not typically fast progressing tumors, you most likely have time to do some research and weigh some options. There may be support for you to get a second opinion from a NET specialist with financial assistance or some other way to work around the out of network designation. This is obviously my opinion but I also fear for you - trusting your surgery to non-NET-familiar doctors and surgeons.

In 2007, my doctor discovered the cause of my excruciating abdominal pain,
a tumor that had wrapped around my small intestine. Suspecting cancer, but not yet confirmed, he called in a favor to a surgeon friend who got me in next day. Surgery was the following day, where most of my small intestine was removed and respected in multiple places. It was then discovered it was NETS. Although the surgeon was not a NETS specialist, he did specialize in abdominal and colon surgery, among other specialties.

@ginnym3 is absolutely correct about you having time for second/third opinions as NETS is generally speaking a slow growing cancer. They surgeon said I'd probably had that tumor growing for a decade or more...

Either way, do what you feel most comfortable with, you have to answer to YOU! Just know that having NETS does not have to be a death sentence!

Best wishes on your journey!

anet782x, Sorry to hear you have this situation, but glad to hear you’re looking for thoughts and support. I was diagnosed in 2018 with a NET when they had to do emergency surgery due to a blockage in my small intestine. In 2019 there was a blockage in my large intestine/colon. They had spread to various parts of my body including one in my stomach that they felt was too dangerous to remove. I’d been sick for eleven years, and had had multiple CTs, endoscopies, colonoscopies, etc. Neither surgeon was a NET specialist but had much experience with intestinal issues. And both surgeries were emergencies, and open - laparoscopic surgery was not an option because of the blockages. Maybe having a very direct discussion with your doctor about the possibility of waiting awhile would be helpful. Has anyone you’ve dealt with discussed other options that might shrink the tumor and buy you some time?
I know this feels so scary and overwhelming. So the more information you can gather, the better questions you can ask. It’s about you and your health so being an advocate for yourself is very important. Best wishes as you go forward.

@anet782x, how are you doing? Did you have surgery?

just a suggestion make certain they are doing a PET/CT Ga-68 dotatate scan. this scan is specific for neuroendocrine cancer. not all facillities have the necessary euipment to do this type of scan.
wishing you the best possible outcome

Hello @anet782x,

It has been a while since you first posted about your NETs diagnosis and probable surgery. How are you doing? Did you have the surgery that was anticipated?

I look forward to hearing from you again. Will you post an update as soon as you are able?

5 months ago, I had a 'gut' feeling (no symptoms) and chose to pay for a full-body MRI. They discovered metastatic NETs in my sm. bowel which spread to my liver (8-10 lesions. They told me slow growing, but luckily last week I went to the ER where they found the cancer had grown 2 cm. (in 2 months). No longer slow. I am in a clinical trial and being treated by an NET Oncologist. Surgery is not an option and I am on Lanreotide (Somatuline). They are hoping it will slow down the spreading.
My suggestion: find a specialist in NETs and be proactive. If you can get in a Clinical Trial then moving forward might be faster. Timing is everything. With newer tests, they are finding out more and more people that have this. I wish you the best of luck!

My experience: they are slow growing until they change to fast growing. Time is of the essence for this silent killer.

Why is a clinical trial helpful?

It might be faster to get the right specialist and treatment.