Scared - Suspected NET on tail of the pancreas
Confused by the information online re: NETs. There is a 2.3 x 1.7 mass on the tail of my pancreas with no vascular activity. The doctor is going to skip the EUS/FNA, go straight to surgery to remove it, and biopsy it then. Blood tests are normal. Conflicting info – are neuroendocrine tumors always cancer or can they be benign? Has anyone else had this surgery to remove a NET and how much pain, recovery, etc…is involved?
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Im better day by day but sometimes i feel pain on the site for surgery after moving after meals for me i finish yesterday 2 months
Get it removed asap. If it spreads your going to be in trouble. I have NET that spread from my pancreates to my liver and have dozens of tumors , inoperable.
I had no symptoms so your lucky it was discovered.
I'm sorry about your diagnosis of NET on the pancreas. As your aware, none of us are doctor's, we generally share information to hope even one part will help the next person to gets some form of NET. Our story is similar to yours, with a mass found on the tail of the pancreas, in April 2022, we were devastated at first, but our oncologist and are own research showed if your going to get cancer, NET's is very beatable, as you will see monitoring this Forum. In our case, we were referred to the Cancer Care Team at Froedert Hospital in Milwaukee, that has a multi-disiciplinary team including NET Specialists (a must) to help you in your battle with NET. They recommended for my wife since she had the mass on the pancreas and too many tumors on the liver to count, to immediately start chemo (pill version) and to evaluate after 3 cycles, and 6 cycles. At both marks her tumors were greatly reduced by up 50% or more. In addition, she is on monthly injections of Lanreotide. It was recommended to continue a few more cycles to get the tumors as small as possible. Now she has surgery scheduled for March 1st, to remove mass (70%) reduced, and they will try to get as many of the remaining tumors on the liver (about 20) as they can (about 70% reduction also), to give her a very good chance to live decades longer and only deal with it on a maintenance type situation. So the key info is get a NET Specialist, there is so many different methods to fight NET's, we are forever grateful to our team to get her this far, with a good prognosis for the future.
Good luck to your wife. I’ve had chemo too, but not the pill. Had injections every 2 weeks for 3 days. Started with the injection at the hospital and brought a pump and bag of chemotherapy home for 46 hours.
I also get a shot of octreotide once a month. Just finished my 12th round [6 months] of chemo. I had to take a break but have a wicked metallic taste in my mouth and can’t eat. Luckily I was a little over weight, I have lost 90 pounds in the last 6 months [ok, a lot over weight] but it came in handy.
I’m on my 3rd hospital, the first 2 wrote me off last year.
At Dana Farber in Boston now and the chemo has shrunk the tumors. Starting a maintenance program next month.
So, good that the tumors have shrunk on the maintenance program on your . From what I’ve read and heard from others on this site you can live with this. On the internet 10 years plus, but they don’t say how old the patients were. If you lasted 10 years at 75 and you passed at 85 that’s not bad, I guess, but if your 50 or 60….
Anyway, good luck, best wishes.
I had mine removed roboticly by a very experienced surgeon. The recovery was very quick. Distal pacreatectomy and splenectomy since my tumor invaded the spleen. Minimal pain. But find a surgeon who does alot of them. Robotics is a skill.
Thanks all! Had the surgery on January 24th, 2023 and Doctor was right. It was a non-functioning neuroendocrine tumor. Fortunately, a bit smaller than previously thought – 1.6cm. They got it all and took the tail of the pancreas while preserving the spleen. (If you can, push for that as many oncologist surgeons just want to take your spleen because it is easier. But they don't always have to and safer to have a spleen with all the potential pandemics coming.)
There was no spread. Have to be checked every few months for a while.
Though mine was robotic surgery, it was a lot more painful than they said it would be. Due to a small fistula, I am also still on a drain 3 weeks later, so not thrilled about that. But reminding myself that at least they found it early and got it out. I DO have a bit of "scan-xiety" now though. Need a mammogram and am afraid.
Sending Love and Light to your wife!
Oh. and I also have an amazing team at Memorial Sloan Kettering in NYC. I was also blessed to be in a Penthouse suite for a week after surgery because there were no other rooms left and then I tested positive for Covid. I was initially devastated by that but then realized it was God's way of giving me extra time with 24-7 care to heal, so Covid diagnosis ended up being a hidden blessing.
Thank you so much. I did.
And praying for your recovery.