Found PNET on tail of pancreas but told it’s nonfunctional

Just an update post operative 6/9/23 distal panc/splenectomy. Operation went well. Supposed to be just 4 nights but pain persist due to abdominal cramps, temperature 38 C later stabilised. Draining not much but on CT 11/9/23 shows leakage so drain has to stay. CRP was elevated that caused him to stay longer in the hospital. Hopefully tomorrow 13/9/23 he can go home 🙏 other than that vitals are within normal limits. Pictures shows before n' after operation.
Lina 😇🙏

@c2pricorn66 how are you and your partner doing?

Hello how did you get to find out the tumor?

Hello, I am a little late in this conversation but I was diagnosed recently and having the same surgery in 2 weeks at Mayo Jacksonville. Would you mind sharing your experience? I am terrified of surgery and recovery time. Any advice on how to better prepare and what to expect would be appreciated.
I am happy to hear you are doing well, it gives me hope.

Hello @lully2505 and welcome to the NET support group on Mayo Connect. I see that you are hoping to post with @michellesimpson10 regarding her surgery experience. So, you have a NET on your pancreas, is that correct?

If you care to share more about your diagnosis, it might be helpful to know how this diagnosis came about. Were you having symptoms that led to tests or scans?

I would also like to invite @kim1965 to post with you as well. His wife had surgery for NETs on the pancreas recently. What are your pressing questions or concerns regarding this surgery?

@lully2505 , how might we help guide you through tour upcoming surgery. My wife had a mass on pancreas removed, spleen removed, gall bladder removed, and debulked as many tumors as they could get off the liver. We can answer questions about those items if that will help you?

Hello, thank you for reaching out. This is gonna be long, so I apologize in advance.
Yes, I have a recently diagnosed PNet on the tail of the pancreas, towards the body. I found it incidentally about a year ago when I went to an urgent care due to stomach pain unrelated to the tumor. A CT scan done at the Urgent Care saw a "cyst" on the pancreas and they recommended I see a specialist and have a pancreatic protocol MRI done. I had to wait almost 3 months to get an appointment with a specialist and when I went in, he dismissed my concerns and said it was nothing to worry about. That was in Feb. 2023
I left the office with a bad feeling, scheduled an appt with my PCP but he was not available until July 14th. I was getting ready to get married on June 11th, so I archived it in the back of my mind until I could see the doctor. I had no symptoms. Fast fwd to July 14 2023, my GP was appalled that the specialist did nothing. He requested the MRI stat, as well as a CA-19 blood test, which was slightly elevated at 37. By luck, my husband has a work contact at Cancer Specialists of North Florida, and she was able to help us get the MRI done and scheduled with an Oncologist.
Between now and then, I have had a biopsy via endoscopy, that confirmed a 1.2cm PNet on tail of pancreas. Well differentiated, stage 1, non functional. I did a Gallium 68 Pet scan and it confirmed the tumor has not spread.
I spoke with multiple doctors, surgeons and Pnet specialists until I got to see someone at Mayo in Jacksonville. Dr Stauffer recommended what all the other doctors had already said - we could watch and wait, however, I am 41 years old, healthy, normal weight, no other health issues. I opted to have surgery to have it removed before it has a chance to spread. Surgery is scheduled for October 13th (Friday, the surgeon was widely available!!). From what I understand, it will be laparoscopic distal, removing tail of pancreas, spleen and any lymph nodes around it.
I am terrified of surgery but the watch and wait approach would not work for me. I have terrible anxiety and my mental health has been a mess since July.
You can imagine we have been a mess, my poor husband having to deal with all this with me within a month of being married. He is very supportive, I don't know what I would do without him right now.
I am looking for others with a similar experience, just to ease my anxiety towards surgery, recovery, what to expect. I am thankful to have found this resource. Thanks for reading!

Hello, thanks for your reply! How is your wife recovering? I hope she is doing well. I am just trying to prepare myself for surgery, recovery, pain, etc.

She had her surgery March 1st of this year. It’s about a 4-6 hr surgery ours was closer to 4 hours. The 1st day was relatively calm, probably the after affects from the surgery. Our 2nd day was more difficult, not bad, as they do a great job managing the pain. The #1 suggestion you will hear, no matter how you bad you feel in bed, they will suggest walks in the hallway as soon as surgery day. Reason being it might only be a short walk the first day x 3 if you can. You will find that these walks are one of the best things to do to feel better and get home sooner. We left at 5 days, minor discomfort, but she had a clot in her lungs that required her to be readmitted to hospital. After that was resolved, she was back home. Keep walking when you get home. Our biggest daily issue has been managing the Type 1 diabetes she has now, not sure if your surgery includes removing the tail of pancreas, if so please ask your team how that will affect you after surgery. Everyone is different, so the more information you get the better. You got this, let us know how we can help further! We are available after your surgery, if you need to speak about how it is going.

Thank you for your detailed response. I am glad to hear she is home, I hope she recovers fully. I asked the 3 doctors I have seen if removing the tail of the pancreas would cause loss of function (specifically diabetes) and all of them told me no. I am reading here however, it seems most people who had this surgery are now dealing with diabetes so now I am confused.
I agree on walking, I had my appendix removed years ago and I remember my recovery was awful because no one told me to walk and every time I tried I was in so much pain, I just couldn't. I have 2 weeks until surgery, I intend to intensify my exercise routine and eat a healthy diet hoping those things will help me during recovery. I exercise and eat healthy already, but now I am even more concerned because of what lies ahead. Thank you for your advice, I look forward to reading your updates and that your wife will make a full recovery.