What's recovery after distal pancreatectomy and splenectomy like?

Posted by blw77 @blw77, Jun 6 2:55pm

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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This is really a question for your medical team. A lot is going to depend on whether they are able to do what's needed laporoscopically or open surgery. We found out that the surgical plan for my wife's distal was going to be open instead of lap only a few days before surgery.

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I did not have a distal surgery but rather a Whipple but any abdominal surgery is a serious operation . My surgeon opted to do an open surgery and I am glad but many opt for Laparoscopy which less invasive. Either way, I think you need to plan for 4 week minimal and then slowly get back to full effort. REST is very beneficial to healing. I do not mean, no movement as walking is a great way to get the internal organs operating better and smoother again and it really helps to reduce abdominal pain and "gripping".

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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 @blw77, I would like to add my welcome along with the others who have provided some insights. Do you know if you will be having open surgery or laparoscopic surgery? Are you able to work from home?

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@colleenyoung

Hi @blw77, I would like to add my welcome along with the others who have provided some insights. Do you know if you will be having open surgery or laparoscopic surgery? Are you able to work from home?

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I am not sure yet which I'll be having, I am waiting to see when the pre-op appointment will be scheduled for all of that information. I am a teacher so depending when the surgery is, I could have some extra down time built in.

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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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Thank you for sharing your personal experience. I know that I need to ask my doctors specific questions but I'm just curious about what others have experienced so I can mentally prepare.

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blw77-

No worries. Please feel free to reach out to me if you think of additional questions. I am an open book and am glad to share what I have experienced and what I have learned along the way regarding NETs.

Warmest Regards,
Sherry

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Hello I had a distal pancreatectomy/splenectomy about 5 years ago at UCLA and it was about a two month recovery with the first month being hard but second month much better. My daughter really helped me by nagging me to walk and walking with me every day in hospital. She is a physician at UCLA and really helped me get used to diabetes even though i took care of my Mother who had type 2 in her later years. Having it your self is a shock but now with a glucose monitor and pump it is easier. It depends on where your tumor is if you will have diabetes after surgery. I never needed any digestive enzymes though so was thankful for that. Good luck with all, leigh

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@leighs2011

Hello I had a distal pancreatectomy/splenectomy about 5 years ago at UCLA and it was about a two month recovery with the first month being hard but second month much better. My daughter really helped me by nagging me to walk and walking with me every day in hospital. She is a physician at UCLA and really helped me get used to diabetes even though i took care of my Mother who had type 2 in her later years. Having it your self is a shock but now with a glucose monitor and pump it is easier. It depends on where your tumor is if you will have diabetes after surgery. I never needed any digestive enzymes though so was thankful for that. Good luck with all, leigh

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Good Afternoon Leighs2011,
I am curious how you were able to determine you did not need PERT (CREON). My wife is pre-surgery right now. Her tumor is in the tail / body area of her pac. She is taking PERT with each meal. Our concern is nutritional uptake. Hate to be gross or provide too much detail BUT…her stools are yellowish, formed but not dense and float. I asked the nutritionist if there is a test for her natural enzyme status or production. They were unclear and / or unsure. I was just curious of your determination in not requiring PERT and how that was resolved for you. Thank you so much for sharing your experience.

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@jqleck

Good Afternoon Leighs2011,
I am curious how you were able to determine you did not need PERT (CREON). My wife is pre-surgery right now. Her tumor is in the tail / body area of her pac. She is taking PERT with each meal. Our concern is nutritional uptake. Hate to be gross or provide too much detail BUT…her stools are yellowish, formed but not dense and float. I asked the nutritionist if there is a test for her natural enzyme status or production. They were unclear and / or unsure. I was just curious of your determination in not requiring PERT and how that was resolved for you. Thank you so much for sharing your experience.

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The diagnostic test for diagnosing Exocrine Pancreas Insufficiency (EPI) is the Fecal Elastase test. Signs that an individual may have EPI are floating stools, oily sheen on toilet water, light, yellow or orange yellow, moderate to painful cramping and bloating especially after consuming fats, urgency in having a bowel movement, foul smelling flatulence and stool. Food passing through GI tract quickly. Weight loss from malabsorption despite consuming large amounts of food and calories.

These links are informative on signs, symptoms, need for and the administration of PERT-

PANCREATIC ENZYMES
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/

https://www.pancan.org/facing-pancreatic-cancer/living-with-pancreatic-cancer/diet-and-nutrition/pancreatic-enzymes/

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@stageivsurvivor

The diagnostic test for diagnosing Exocrine Pancreas Insufficiency (EPI) is the Fecal Elastase test. Signs that an individual may have EPI are floating stools, oily sheen on toilet water, light, yellow or orange yellow, moderate to painful cramping and bloating especially after consuming fats, urgency in having a bowel movement, foul smelling flatulence and stool. Food passing through GI tract quickly. Weight loss from malabsorption despite consuming large amounts of food and calories.

These links are informative on signs, symptoms, need for and the administration of PERT-

PANCREATIC ENZYMES
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/

https://www.pancan.org/facing-pancreatic-cancer/living-with-pancreatic-cancer/diet-and-nutrition/pancreatic-enzymes/

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Thanks for info now I have a better idea of what goes on thanks.

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@leighs2011

Thanks for info now I have a better idea of what goes on thanks.

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Absolutely do the fecal test. Only 1 sample is needed – at least for me. Will get results quickly and you will know if you need digestive enzymes. Possible enzymes: prescription, Creon or Zenpep. Both are pricey because no generic is available ( roughly $10 per pill if no insurance, $2 per pill with insurance-remember you will need 1 per meal. HOWEVER, these are simply pig enzymes and if you check Amazon you will find about 40 different brands(over the counter). I initially bought Micrazyme, were about 60 cents per pill, and they worked. Company is based in England and “pills are manufactured to EU standards” and Amazon delivered in 2 days.

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