What's recovery after distal pancreatectomy and splenectomy like?

Hello @avargas and welcome to Connect. I am glad that you are finding support from others. Please be aware that Connect does not want personal emails to be given on the public forum. This is for your protection so that you are not opening your email up to spammers. If you would like to contact a member privately, please use the Personal Message option at the top of your screen. That said, by using this forum you will get support and feedback from many others.

As you are comfortable sharing more, what symptoms led your medical team to the decision to perform a distal pancreatectomy?

Hi Sherry, I will have my distal pancreatectomy next week, I have some questions that I would like to ask you, is it ok if I give you my email or can we send messages on here?
Thanks in advance

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)

I too had a subtotal open pancreatectomy and spleenectomy in November. Recovery was pretty speedy. There was a lot of gas pain after surgery and my advice to anyone is, even though there is pain, get up and force yourself to move. Walking helps with the gas. The doctors and nurses at Mayo are phenominal and I was fortunate to have gone there. Happy Blessed New Year to all of you.

I also had a JP drain which stayed in for a couple weeks maybe less. When it got full I unscrewed it from the catheter and emptied in the toilet. I will not go into the ordeal I had to have the drain removed other than I vasal vagaled and almost went unconscious. My port was delayed because I developed an infection. Totally agree with the food. I am really getting better with eating healthy. I did eat some stuff I shouldn't of but it is New Years Eve. No alcohol and only 1 Pepsi. 🙂

Happy and healthy New Year to everyone.

I was 75 in 9/2022 when I had my distal with spleen removed. I had absolutely no pain. Just a few holes with, I guess, stitches that desolved on their own. They also installed a little pain pump that the nurses would insist I use. They did not want any pain. I also had a little fluid drain. Everything was removed on day six, again with no pain. Have a friend who had to keep her drain in for about 10 days after discharge...but it's no big deal. It's self contained. Doubt if you'll need to do anything with the drain if it does need to remain for a few extra days. I rested for one day, then headed out to walk and explore the neighborhood. Took it slow the first two or three days and gradually picked up the pace and increased the distance. By the time I was ready for my port, I was just about where I was prior to surgery. Diet? Eat healthy. Leave the processed and junk foods behind. Add plenty of foods good for the microbiome, (sugarless yogurts, sourkraut, miso, pickles, etc. - no sugar substitutes) it will help immensely with bowel issues. Take full advantage of your dieticians advice! Wishing you the best.

I had a distal pancreatectomy. There really is no exact answer. Every person is different. I was in the hospital for 7 days. I also had my spleen removed. They attempted to do it less invasively but had to open me up. I have a lovely battle scar. As far as pain. again it depends. At first I was on the pump where I could push the button. Then just every x number of hours. Slowly the pain lessened but for the first few weeks it was pretty bad.

Robot assisted sounds so futuristic but I know it is done. I don't think I had that option. I had to do the shots also. I take Creon, three pills three times a day. How is your neuropathy?

Hi,
I am 66 years old and had a distal pancreatectomy with splenectomy in July 2022. I had an IPMN pancreatic cyst that looked suspicious. The post-op pathology showed an adenocarcinoma, and I have stage 1b pancreatic cancer. In my experience with the operation, I was in the hospital for five days. It would have been four days, but I was kept in due to a fever. Initial pain following surgery was managed with self-dosing IV for one day, followed by oral pain meds. I didn't find the pain to be excruciating. My operation was performed with robot assisted means, and I had five small incisions. Uncomfortable at times, but not painful. I was told that full recovery would be three months, but I felt pretty good in half that time. I followed a low fat diet, avoided lifting, and got regular light exercise (walking was very good), and rested. Part of my regimen was self-injecting meds to prevent blood clots, and Regalen to help with digestion. Without a spleen I needed to follow up with vaccines. I hope this is helpful. Each person's experience is not the same, I think, but I hope that you can draw some help from my experience. Let me know if you have any questions.

Welcome @faithjlv. I moved your message asking for suggestions and advice prior to your husband's distal pancreatectomy with splenectomy to remove a neuroendocrine tumor to this existing discussion:

- What's recovery after distal pancreatectomy and splenectomy like? https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/

I did this so you can review the previous helpful suggestions made and to connect easily with fellow members who have been there like @ken240 @blw77 @skkirby @leighs2011 @jqleck @stageivsurvivor and more.

You're asking great questions like pain management, length of hospital stay and things you can do and be prepared for to make his recovery as smooth as possible. It is terrifying. I get that. I know members will have tips to help. Your husband is lucky to have you.

My husband is having a distal pancreatectomy with a splenectomy to remove a Neuroendocrine tumor located towards the tail of the pancreas. I could use all the insight any of you might have. How was recovery? How much pain will he be in? Any ideas on how to make his hospital stay easier? What about when we come home from the hospital? Is there anything I can do to make this easier for him? I feel lost and really could use any information you feel comfortable sharing with me. Thank you for your help. This journey is terrifying.