Hi there,

My name is Sherry, welcome to Mayo Connect. I don't know if it will help you, but I will try to answer any questions you may have. I had a distal pancreatectomy and splenectomy in January 2021. My tumor was located in the head/neck area of the pancreas and was approximately 1 1/2 inches in diameter. My recovery was not horrible, but it was lengthy. I was admitted to Mayo Rochester for 10-11 days, as I had trouble with bowel/bladder function resuming. (Not the norm for most patients- as I always have trouble with those following surgeries). The initial pain following surgery wasn't too bad, but everyone is different in how their body reacts. The nurses are amazing at reading patients and be sure to have your spouse speak up if he is uncomfortable. Mayo is quick to remedy pain, as it can really hamper your healing process. The worse part for me was lying flat, since the incision is about 5 inches long and runs from just underneath the bra line straight down about 5 inches. When the surgery is performed, the surgeon cuts through the abdominal muscles which is what takes the longest to heal. I think I slept in my recliner for about a month after arriving home. I was still having trouble lying flat so in June 2022, I had to minor in clinic procedure performed as the incision site was still sore and I couldn't lay down without my ab muscles being sore. I found out that it was scar tissue that was pulling my incision site inward. Once the scar tissue was removed, I can now lay flat but some days if I push myself really hard, I do pay for it when trying to lay flat. (I don't know that this is the case for everyone but wanted to let you know my story). When it comes to your question about making the hospital stay easier, I would suggest just the normal creature comforts (robe, slippers, reading material, Chapstick, if he has personal grooming items he might like to bring, cell phone). I was in the hospital at the height of COVID; the day we arrived at Mayo for my surgery, we were informed that he could only stay while I was in surgery and to speak with the surgeon afterward. Then we would have to communicate via cell phone or laptop. However, I lucked out and just before surgery, the rule was lifted, and he was allowed to see me after surgery and come to visit me each day. Since no other visitors were allowed in the hospital except significant others it was a quiet and COVID -free safe place to walk the halls when I was feeling up to it. When he comes home following surgery, easy meals are best. I was blessed to have my girlfriends bring in meals for my spouse and I for a month after I arrived home. His abdomen will be black and blue from the Heparin shot (blood thinners) they may give him, and he will be sore, but each day it WILL get better. Following surgery, your surgeon will share with you the type and grade of the tumor and what type it was. (It's hard to do that prior to surgery). The surgeon will continue to resect the tumor until he reaches clear margins. What that means is, during surgery, they will continue to cut tissue out little by little, sending specimens to the lab until it comes back that there are no remaining cancer cells. That is not to say the cancer is cured, it's just that to the naked eye, the pathology slides are coming back clear. Once it has been determined they type and grade of cancer, they may suggest radiation, chemo, a combination of both or nothing. I initially had chemo in-hospital, but I did not need radiation. Rest assured, if you are seeking care at Mayo (which I highly suggest), they are very, very thorough.
I was also given Octreotide after surgery, and it was HORRIBLE! It is used to help with the diarrhea that your spouse may/may not experience after surgery. I had to refuse it after three days of taking it because I would get so sick and vomit, which pulled on my abdominal incision, and it was too painful to keep vomiting. Again, please know that this may not be your spouse's reaction. (I am an open book and am purely sharing my story). Your spouse will be set up with an oncologist following his visit. If you are seeking care all that will be set up for you, but please ask your surgeon or nurse about that. There are many types of pancreatic neuroendocrine tumors and mine was very rare form. I ended up having 60% of my pancreas removed, along with my spleen and now I am diabetic and take daily insulin. Totally worth the surgery. Diabetes is not bad compared to the alternative. (More on that if you need to know, just ask). Oh, another thing- since he is having his spleen removed he will lose immunity and Mayo will suggest vaccines that he should receive prior to and for years following surgery. There are a lot so be sure to ask your nurse about this. I was just in for an office visit and my oncologist actually thanked me for keeping up with my vaccines as she just had 3 patients that had their spleens removed and were in serious health troubles because they didn't follow up or keep up with them.
Everyone's cancer journey is so personal and so different. I hope this helps to calm your worries and fears. Please know that Mayo Connect is a great source of information, but it can also be overwhelming to process what is being shared. My advice is to take each day as it comes and digest the information in small segments. When I am feeling anxious and overwhelmed, I reach out to my support (mainly my spouse) and we cry, laugh and talk it out together. I applaud you for doing your research and asking for help. I am here if I can help in any way. PLEASE don't be shy about asking. Special Blessings to you and your spouse! Please keep in touch.

Warmest Regards,
Sherry
Ps. My surgeon was Dr. Cleary (Rochester Mayo)

Hello @faithjlv
I am going through what you have gone through. It's terrifying, stressful and lots of tears and fears. My partner is having an operation on the 6/9/23 same thing accidental findings through CT for his hernia. He's had donate, ERCP, MRI , Gastroscopy pNET and PET Scan showing it's encapsulated. How is your husband now ? and his journey ? Hope he recovered well.