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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Profile picture for Sherry @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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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.

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Profile picture for kateanna @kateanna

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

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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 .

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Profile picture for Sherry @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

Jump to this post

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

REPLY
Profile picture for kim1965 @kim1965

@skkirby
Hi, my wife is going in March 1st for this surgery. She was diagnosed April 2022, has completed 9 cycles of chemo, and the doctors are ready to try to remove as much is left. She also is having lesions removed (20 maybe) on liver, and remove gall bladder as it gets all clogged up from all the chemo the past few months. Questions to you are, I've read if possible, if the spleen can be saved to be very beneficial long term, I understand if the cancer is on the spleen there may be no choice. Were you explained that before the surgery or not? Just trying to get questions ready for the surgeon before pre op appointment next week for her surgery. Was your surgery open surgery or laporadic? Any and all info you can share either questions to the surgeon or if you had to do the surgery again, and basic advice?

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If I may insert my own experience with my distal pancreatectomy and splenectomy in July 2022. It was explained to me prior to surgery that they would try to save the spleen, but because it shares so many blood vessels with the pancreas, it is more efficient to remove the spleen. Without the spleen, I just need to keep up with vaccines to avoid certain infections, such as meningitis. My procedure was performed robot assisted, mostly laparoscopic, with five small incisions, and one slightly larger. No complications. After surgery for the IPMN, I did have stage 1b pancreatic cancer and am finishing chemo soon. But I feel that the initial surgery went very well. Let me know if you have any questions. Best wishes.

REPLY
Profile picture for Sherry @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

Jump to this post

@skkirby
Hi, my wife is going in March 1st for this surgery. She was diagnosed April 2022, has completed 9 cycles of chemo, and the doctors are ready to try to remove as much is left. She also is having lesions removed (20 maybe) on liver, and remove gall bladder as it gets all clogged up from all the chemo the past few months. Questions to you are, I've read if possible, if the spleen can be saved to be very beneficial long term, I understand if the cancer is on the spleen there may be no choice. Were you explained that before the surgery or not? Just trying to get questions ready for the surgeon before pre op appointment next week for her surgery. Was your surgery open surgery or laporadic? Any and all info you can share either questions to the surgeon or if you had to do the surgery again, and basic advice?

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

There is a difference, but that's above my pay-grade 🙂
- Comparison of clinicopathologic characteristics and survival outcomes between invasive IPMN and invasive MCN: A population-based analysis https://www.frontiersin.org/articles/10.3389/fonc.2022.899761/full.
- Pancreatic Cystic Neoplasms: Different Types, Different Management, New Guidelines https://www.karger.com/Article/FullText/489641

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Thank you!

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Profile picture for skiball @skiball

Thanks Colleen. I have been told mine is IPMN intraductul pappilary mucinous neoplasm. Wonder if they are one and the same?

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There is a difference, but that's above my pay-grade 🙂
- Comparison of clinicopathologic characteristics and survival outcomes between invasive IPMN and invasive MCN: A population-based analysis https://www.frontiersin.org/articles/10.3389/fonc.2022.899761/full.
- Pancreatic Cystic Neoplasms: Different Types, Different Management, New Guidelines https://www.karger.com/Article/FullText/489641

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Profile picture for Colleen Young, Connect Director @colleenyoung

@skiball and @shezza51, I believe when @blw77 said "...and watching an MNC slowly but steadily grow,..." MNC refers to Mucinous Nonneoplastic Cyst of the pancreas.

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Thanks Colleen. I have been told mine is IPMN intraductul pappilary mucinous neoplasm. Wonder if they are one and the same?

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Profile picture for shezza51 @shezza51

Whats an MNC please ?

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@skiball and @shezza51, I believe when @blw77 said "...and watching an MNC slowly but steadily grow,..." MNC refers to Mucinous Nonneoplastic Cyst of the pancreas.

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Profile picture for snd @snd

What kind of tumor did you have plz?

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Hi there-
I had a pancreatic neuroendocrine tumor of the Islet cells.
Can I help you further or answer any additional questions? Glad to help if I am able to.

Warmest Regards,
Sherry

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