Follow up surgery for PNET

Quick question...did they do the distal surgery without a dota pet scan?
As far as being scared goes, there is every reason to be concerned, but please try to reckon with your fear. I know from experience how damaging fear is. It destroys everything. You are doing everything you can to solve this issue. There's great strength in knowing that you and your doctors are doing their best. If the mass is a fast growing NET, they will go back in and remove it if they can, probably. If it didn't glow on the Dota pet scan, then it could be something else. Be peaceful, but be proactive. You are not alone. Everyone on this site is your well wisher and knows something of what you are going through from personal experience. And many of us are willing to talk if you need it. 🙏

When they found the NET in the pancreas the biopsies it and told me I could wait it off or have it removed. They didn’t offer PET scan cause according to them they’d don’t think I needed it.

In our case the PET scan was done twice, once after 6 month check during chemo, and before surgery, 6 months later before surgery. I’m concerned from your doctor’s comment that they didn’t think it was needed. In our case it is the main test to see where exactly the NET is before our decision points on which direction to take. Do you have a multi- disciplinary team including a NET specialist? But every case is different, we are not doctors, but just offering our experience in our cases with NET. 🙏

She’s a specialists in pancreatic surgery and surgical oncologists

The gastroenterologists referred me to her after two failed biopsies.

I agree with Kim. You need a NET specialist.

NET is a very rare cancer still and many experienced oncologists still have dealt with very few cases. Our oncologist realized that and connected us with a multi disciplinary team which included a NET specialist. It was probably the decision that saved her life. The team decisive decisions based on the best methods to beat or knock down NET, has gotten our case to a point where she should live a full life although not without continued challenges. Let us know how we can help you in your fight against NET. We are all on the same team. 🙏

How can I find NET specialties. Mayo Clinic and others are out East from me. My insurance won’t cover it.

Hi milagro45pr

I agreed about finding a NET specialist.

Here is a great website, click on Patient, link for tons of info and locate a specialist near you! Hope this helps!
http://www.netrf.org/for-patients

How did they find the tumor without a GA-68 PET scan? Is your tumor size measured in millimeters?