What's recovery after distal pancreatectomy and splenectomy like?

Posted by blw77 @blw77, Jun 6, 2022

Can anyone give me information on how their recovery was after distal pancreatectomy and splenectomy? After 2 years of MRIs every 6 months and watching an MNC slowly but steadily grow, my doctor said that I should have this procedure. I'm 45 and typically a fairly healthy and active female. I'm trying to figure out how much time I'll need to be off of work or if I can manage to squeeze in in during the summer yet while I'm off.

Thank you for any information you have!

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@skkirby

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

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@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.

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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.

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@gamaryanne

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

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Thank you for sharing your story

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@skkirby

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

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Hi, Sherry,
Thanks so much for your response! I was thinking I might ask about enzymes. The GI stuff isn't terrible but it I'm definitely not the same as I was before surgery! They took the tail of my pancreas, the spleen, and 8 lymph nodes. I still have a gall bladder for what that is worth! I am in Richmond, Virginia. I have a holistic practice in mind that I might try if my GI stuff gives me a lot of trouble going forward. Loss of taste, at least loss of enjoying food, seems to be getting a little better. I heard that is a common thing, though my surgeon denied it! Anyway, thanks and I hope you are doing well! Let me know how you are doing.

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@skkirby

Hi there-
I had a distal pancreatectomy/splenectomy for a pancreatic neuroendocrine tumor in January 2021 with Dr. Cleary (Rochester Mayo). I was admitted for an 11 day stay. I would say its not a horrible recovery; but its a long one as I am a year and a half out from surgery and still have trouble laying flat. I just had to have scar tissue removed from the 6 inch incision and that was actually more painful than the initial surgery. I hope you are feeling better soon. If you need me to share more, or if you have additional questions please ask. I will be happy to share. Wishing you peace.

Sherry

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Hi
Thats very helpful i had same op oct 27 2022 and am now experiencing more issues than in 1st 3 months.
My gp thinks i may have adhesions as Every few weeks i get horrific pains on waking & all day which last 7-10 days and wake me from sleep when painkillers wear off--4 hours is max sleep
Having temp & extremely swollen arm after the " splenic" injections as well.
Exhausting & a bit depressing and my friends are all younger & still at work.
Any advice please ?
How did your Dr or surgeon confirm scar tissue ??
Incision is huge isnt it ? i was shocked as expected laparoscopy but now have scars from both
Any advice will be helpful & appreciated
Cheryl
( im in Australia so drug brand names are different i think ?)

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Thank you for sharing your difficult story. Not easy to not be apart from life in the mainstream. Takes an emotional toll. You are not alone in your struggle to find the best treatment. Hope your symptoms can be relieved.

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@shezza51

Hi
Thats very helpful i had same op oct 27 2022 and am now experiencing more issues than in 1st 3 months.
My gp thinks i may have adhesions as Every few weeks i get horrific pains on waking & all day which last 7-10 days and wake me from sleep when painkillers wear off--4 hours is max sleep
Having temp & extremely swollen arm after the " splenic" injections as well.
Exhausting & a bit depressing and my friends are all younger & still at work.
Any advice please ?
How did your Dr or surgeon confirm scar tissue ??
Incision is huge isnt it ? i was shocked as expected laparoscopy but now have scars from both
Any advice will be helpful & appreciated
Cheryl
( im in Australia so drug brand names are different i think ?)

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Hi Cheryl,
I am so sorry to hear you are having such troubles. My adhesions were painful, but not as bad as what you are having. I think you should push your GP look deeper into the issue. As trite as it may sound, try to stay encouraged. In time, you will feel normal. It's been almost 2 years and there are some days that I feel like my age (56) but then I have days where I have a ton of energy and feel as if I can conquer the world. Please don't let this get you down. You have survived cancer and are tougher than you think. I still work (but can retire next month). 🙂 I haven't quite decided what I will do but it's nice to know I can retire if I choose to. You should consider yourself lucky to be retired! (I envy you!!!!!) In the U.S healthcare is so expensive, that even though I can retire, I would still need to pay my own health insurance until I hit 65. I also have the laparoscopic scars and the 5-6 inch scar. If you feel your pain is from adhesions, I would see a surgeon as I think that would definitely alleviate some of the pain you are experiencing. Wishing you all the best. Here if I can help or if you just need someone to chat with.

Special Blessings,
Sherry

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@gardenlady1116

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.

Jump to this post

Hi there-

Did you get relief from the pancreatic enzymes?

Thanks,
Sherry

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@skkirby

Hi there-

Did you get relief from the pancreatic enzymes?

Thanks,
Sherry

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Pancreatic enzymes changed everything. My appetite got better, weight has stabilized, I could enjoy eating again. My intestinal symptoms had been disrupting my life. Things are not completely normal, but I feel I got my life back. This isn't everyone's experience, I clearly had pancreatic enzyme deficiency. The gastroenterologist did not recognize it but my oncologist right away recommended the enzymes.

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@skkirby

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

Jump to this post

@skkirby
Surgery came out good, lower tail of pancreas removed, swollen removed, gall bladder removed, removed about 13 tumors on liver. Surgeon says she didn’t get them all since done are micro small. Although the remaining ones are only on the right lobe, she is considering removing the right lobe after restarting chemo Cap/Temp, to reduce further then remove the right lobe. Hopefully becomes a mtn. Issue only going forward after that. What questions do you have that I could help you?

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