What's recovery after distal pancreatectomy and splenectomy like?

Thank you for sharing your story

At my treatment facility there is a dietician who works with the hepatobiliary/pancreatic cancer patients. It was quite helpful. You could see if your surgeon can refer you to a gastroenterologist with extensive knowledge of pancreatic disease. The gastroenterologist who did my biopsy and stent did a great job but when I asked about pancreatic insufficiency, he wasn't sure. The oncologist immediately gave me pancreatic enzymes which was a huge help. When I went to see a surgeon for second opinion, he asked me about my symptoms. I told him I was having a lot of difficulty with gas, loose stools on the dose I was taking, he advised to increase. Just the ticket! I have involvement of the superior mesenteric vein so I am not a candidate for surgery at this time and will go back in another month to get another CT scan. I am most thankful for the good advice of the surgeon and hepatobiliary dietician, greatly improved the quality of my life. If the surgeon isn't able to help with your symptoms, perhaps a referral to someone in another discipline could help. Quality of life is very important to me, but might not always be a top priority of a surgeon. Keep looking for help with managing your symptoms.

@skkirby
Thank you very much for the suggestions, and possible additional questions to ask the surgeon. We have my wifes's pre-op meeting with surgeon, annesthesia consult, and final blood work before surgery on March 1st. Our surgeon is highly experienced, but doesn't share much, so I will need to have my questions ready for this Thursday's meeting.

I had the distal pancreadectomy 12/7/2022. One drain was out after about 3 days. Home on 4th day. Sore mid section of course but routine of OTC pain meds handled except once when I took a tramadol. Did hurt when I laughed for about 4 weeks and some pain down my left side and in my shoulder. Also very extended belly for awhile due to has used for the Lap surgery. I believe my recovery was good due to two things:
An excellent surgeon
Expedite

My surgeon has a dietician on staff. I see her every visit. She advised I buy expedite and drink one daily for 6 days up to the surgery and that it would speed the healing process. I believe it did!
I am now scheduled for liver surgery this upcoming Monday and am drinking one a day. It is a “medical food” with concentrated collagen dipeptides. You might ask about it

Hi Kate,
I had the surgery as I had a malignant pancreatic neuroendocrine tumor in the head/neck of the pancreas that tripled in size over a 2 year period. I chose to have the surgery, as pancreatic cancer is often known as the silent killer. I didn't want to have to continue to worry about it, which is why I chose to have the surgery. (I have also had lung cancer, so I didn't want to take any chances). My tumor and lymph nodes were tested during surgery, which is when they were able to grade my tumor. Yes, I underwent 4-5 biopsies prior to the surgery. Interestingly, biopsies 1-4 showed that the tumor was benign, but biopsy 5 showed that it had become malignant. The most challenging part of recovery was lying flat in bed. The recovery isn't horrible, it just lays you up for about a week or so. I was feeling like myself at about 3-4 weeks out. I will be honest though- your abdomen will be bruised, and sort and you may walk around holding it while you walk. But that goes away quickly. I did have a nasal gastric tube to drain bile for 1-2 days and then it was removed. (It's not horrible, but my nose itched constantly.) I would be happy to connect with you via email or private message.
Stay encouraged and know that you have a huge support network here at Mayo Connect.

Warmest Regards,
Sherry

Hi there-
Yes, you are correct: if the spleen can be saved, long term your wife will be able to fight off infections easier, however, most surgeon's will remove it because it has such a rich blood source and is connected to the pancreas. My suggestion would be to share that concern with your surgeon. When I asked my surgeon about this same concern, he explained that he would try to save it, however, it's a very tricky and complicated surgery. My surgery started as laparoscopic but was converted to an open surgery. I would ask about drainage tubes, of the cancer has metastasized, what grade/type of tumor(s) they found, length of hospital stay, probable outcomes, and what vaccinations she will need for life if the spleen is removed. Due to my spleen being removed, I need numerous vaccines at varying intervals for the rest of my life. I would inquire about that also. I would be very interested to hear the outcome of your wife's surgery. I currently have a lesion on my liver that is small, however, my oncologist is watching it closely. I wish you and your wife peace as you head into the unknown. It can be scary but know that you have a huge support network here at Mayo Connect. If I can help further, please let me know.

Warmest Regards,
Sherry

Hi there-
I am sorry to hear that you are experiencing stomach discomfort. It very well could be that the scar tissue is sticking to the incision site. If your surgeon is not onboard with looking into that, I would check with a cosmetic surgeon that specializes in abdominal surgery. My cosmetic surgeon is the one who actually ended up fixing the issue and I am so much better and can actually lay flat in bed without pain. She indicated that my scar tissue from the pancreatic surgery was actually quite deep. I hope you get relief. I don't know where you live but if you are in the Twin Cities, I can recommend my surgeon to you if you private message me. As for the digestion, I also still have issues with that part. Just last week my doctor informed me that I have low hemoglobin and iron which she believes is due to my surgery, so I am receiving IV iron infusions for the next 4 weeks. Rest assured it's not uncommon to have GI issues after surgery. The way my doctor explained it was this: "because you have lost the gallbladder, spleen and pancreas which all kick in bile when you eat to help with the digestion process, most people that have undergone the surgery you have, will have GI issues." You may want to ask about taking enzymes (can be oral pills or IV infusion) to help with your discomfort. Enzymes can be tricky as there are different types, so be sure to check with your physician. Daily I currently take (2) Colace- which you can get over the counter, and MiraLAX with my coffee, which seems to help somewhat. I am not sure what your circumstances are, but I am a huge advocate for speaking up with my doctor. If you don't feel as though you your doctor is taking your concerns seriously, I would suggest looking into changing to one that will listen to your concerns and take action. It's your body and you have already been to hell and back (worry, surgery, healing ect. ). Purely my thoughts of course. You got this! Stay encouraged and let me know if I can help further. Please know in your heart that I care and would love to keep in touch.

Warmest Regards,
Sherry

I had a distal pancreatectomy/splenectomy for a pancreatic neuroendocrine tumor in October 2022. I'm glad to find a person who had that specific thing also, as it seems hard to find a lot online about that (especially with a neuroendocrine tumor, which apparently is rare?).
I'm in my fourth month of recovery and doing well except I do have some discomfort in my stomach, and wonder if it is due to a lot of scar tissue. My surgeon is kind of lax about giving me details, which is frustrating. I wonder if there's any medication I should be taking to improve digestion and bowel issues also. It's all new and confusing! I hope you're doing well.

What actually is the gray area .Is it biopsies aren't testing cancerous??I believe my husband maybe in the gray area as well.He is unable to get MRI because of his pacemaker is hindering his diagnosis.God bless !!Interested in your case .

Hello Sherry,
Thank you for sharing! I am sorry you are having issues with lying flat! Why is that?

First of all, why did you have this procedure. Was it 100% necessary? Did they biopsy your tumor and was it cancerous?

My case is in the "grey" area and i am wondering if I really want to go through this major surgery. What was the most challenging part of your recovery and how soon afterwards did you feel 100% back to normal. Also, did you have draining tubes for an extended period of time?

I would so love to connect with you via email if at all possible for some additional questions if you would be open to added sharing.

Thank you kindly,
Kate Coleman