Did anyone have pnet in pancreatic tail and had distal pancreactomy ae

Hello @kathyfujii and welcome to the NETs support group on Mayo Clinic Connect. We do have other members who have Pnets in a similar location. Here are some of the discussions that mention this:

--Pnet in tail of the pancreas portal and splenic veins
https://connect.mayoclinic.org/discussion/pnet-in-tail-of-pancreas-portal-and-splenic-veins/
I would encourage you to read the posts in the discussion and ask any of the members questions.

I would also like to invite @tomrennie, who has had a similar diagnosis. Have you been seen by a NET specialist yet? If not, I would recommend this as a first step. NETs are a rare form of cancer, and a NET specialist has more experience in treating this type of cancer effectively. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63).

If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/. If you need to travel to consult with a NET specialist, it would probably be worthwhile.

How are you feeling?

Seena Magowitz Foundation offers a free Zoom consultation with Dr. Evens in WI one of the best pancreas surgeon in the US. He does mutable these surgery's a week.

My operation was open incision (not at Mayo). They did liver ablation at the same time, not sure if that had anything to do with it. They removed tail of the pancreas, gallbladder and spleen. This was a year ago April, and I still feel tightness at the incision point when I move. Doesn’t affect me much but is noticeable.
For recovery there was no food for a couple days, was up and walking a bit the 2nd day. I was released from hospital a week later with lifting restrictions. Had quite a bit of fatigue (still do, for various reasons).

@kathyfujii I have a pnet in the body and tail that has spread to my liver and bones. It too had grown into some veins. Are you experiencing any symptoms? What led to your diagnosis?

I've had constant pain that one GI thought I had Celiac's. My recent CT and MRis confirmed NET in pancreatic in tail. Did GA68 DOTATATE Pet scan that said it's localized so awaiting 2 surgical consults in San Francisco Bay Area. Hoping for laparoscopically resection. I'm not sure about any drugs though as I've just started on this journey.

@kathyfujii The ga68 dotatate scan is still how my NETs are evaluated. The ga68 dotatate scan suggests that you might have a NET Specialist. Do you? I have been managing a stage 4 pnet for over 3.5 years. It can be an interesting journey. Localized is very good. When are the surgical consults? Do you know what grade your pnet is?

I believe it's low stage 2. One consult is 4/15 and other is 4/24. Both have excellent reputations here in Bay Area so I feel fortunate.

Hello! I have been managing PNET for 3 yrs now. Had liver debulking surgery and dystal pancreatectomy, splenectomy and cholesystectomy on Feb.1 2023. I had open surgery due to having total hysterectomy for endometrial cancer at the same time ( unrelated). Ga68Dotatate PET scan was used to determine the surgical areas. I still have some sensation on the surgical place, but not too bad. Mine was differentiated, Grade 2, Stage 4. Have been stable and on Lanreotide every 4 weeks (120mg/ml) since. Was in the hospital for 7 days.

@kathyfujii Thankfully, they are soon. It is nice to have a game plan.

Hi! I have had 2 distal pancrectomies.,The first one 3 1/2 years ago was done robotically, spleen sparing,for a 2.1 cm tumor. (Well differentiated , Grade 2) ( My recover was very easy, amazingly easy to be honest with no recovery problems.)

My latest second distal pancrectomy, again spleen sparing , was done 7 weeks ago and it was quite a difficult experience. I ended up needing to be converted to an open procedure for my 1cm tumor on tail remnant, because My prior surgery had adhered to the outside of my stomach(no symptoms) so I had to have a small wedge taken off of the stomach.

I have had numerous complications, and have been hospitalized 3 additional times for various post surgical issues.

It has been a most difficult experience compared to the first surgery. Recovery has been very slow. I am also on creon this go round, but hopefully not permanently.

So I have had experiences on both sides of the scale. Both surgeries were done by the same surgeon.

If you can, opt for robotic in the hands of a highly skilled surgeon at a high volume hospital. Realize though, that sometimes they still may have to open you up….
Best of luck to you!!!