1. < Neuroendocrine Tumors (NETs)

Surgery of PNET

Posted by outlawcancer @outlawcancer, Feb 7, 2023

Hello everyone,

I have surgery coming at the end of this month for a PNET on my pancreas. Dr’s will be performing spleenectomy and distal pancreatectomy. I would like to know from those who have had this type of surgery what complications you had and one of the major concerns are how long did any one person have the drain tube in their cavity? I have heard this is one of the leading causes of longer hospital stays and complications. Any thoughts , info and experiences would be helpful. Thank you

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 10, 2023
In reply to @jadedprincess "Hello. I had a distal pancreatectomy with splenectomy. A common complication is a leak from the..." + (show)
@jadedprincess

Hello. I had a distal pancreatectomy with splenectomy. A common complication is a leak from the pancreas. This is something I experienced and a drain was put in to deal with this. I had the drain for about 2 months. It was inconvenient but manageable. You can expect a "paralysis" of the stomach for about three months. I did mostly a liquid diet and had to force myself to even do that due to lack of appetite. But this will pass. You will need alot of rest to recuperate. My advise is to be positive and be patient. Healing takes time and sometimes there are bumps in the road. I'm 100% better now with a small scar. I hope everything goes great for you. Hugs!

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Hello @jadedprincess,

You offer some invaluable advice to those anticipating pancreatic surgery or a splenectomy. Your post represents the value of a patient-to-patient conversations like this.

How long did it take you to resume a normal diet?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 10, 2023

@outlawcancer and @kim1965, you may also be interested in this related discussion:
- What's recovery after distal pancreatectomy and splenectomy like? https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/

Such a good question about diet, @hopeful33250. So many members ask about returning to a "normal" diet after surgery for pNETs. I look forward to your tips @jadedprincess @ahtaylor and @smt.

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1 reply
ahtaylor | @ahtaylor | Feb 11, 2023
In reply to @colleenyoung "@outlawcancer and @kim1965, you may also be interested in this related discussion: - What's recovery after..." + (show)
@colleenyoung

@outlawcancer and @kim1965, you may also be interested in this related discussion:
- What's recovery after distal pancreatectomy and splenectomy like? https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/

Such a good question about diet, @hopeful33250. So many members ask about returning to a "normal" diet after surgery for pNETs. I look forward to your tips @jadedprincess @ahtaylor and @smt.

Jump to this post

Thanks for the question about returning to a normal diet after distal pancreatectomy and splenectomy. I was very fortunate - I really did not have any dietary issues other than the typical post operative routine where they slowly advance your diet to ensure you tolerate food. My dietary restrictions are more related to continuing to have insulinomas and the diet restrictions that come along with managing blood sugars.
I had more problems with diet after my modified Whipple and that was a result of my intestines taking time to "wake up" after all of the manipulation.
In both cases I was able to eat a normal diet very soon after being discharged.
Hope this helps to some degree but please feel free to ask additional questions, if needed. Thanks!

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pavlina60 | @pavlina60 | Feb 12, 2023

@outlawcancer - I had the surgery on Feb.1, discharged after a week. Had the drain tube removed before going home. Have a G-J tube in my stomach ( just in case for feeding, as my tumor was close to the stomach and Dr was not sure if he can save my stomach. Luckily, this will go away in a month or so. I am still on a semi liquid diet. Recovering from a major surgery and waiting to see the next step - chemo.
Good luck! It is surviveable🙏 God be with you!

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jadedprincess | @jadedprincess | Feb 13, 2023
In reply to @hopeful33250 "Hello @jadedprincess, You offer some invaluable advice to those anticipating pancreatic surgery or a splenectomy. Your..." + (show)
@hopeful33250

Hello @jadedprincess,

You offer some invaluable advice to those anticipating pancreatic surgery or a splenectomy. Your post represents the value of a patient-to-patient conversations like this.

How long did it take you to resume a normal diet?

Jump to this post

There was about 3 months of forcing down a liquid diet. But after that I began with a "bland" diet of anything that sounded good. At about 5 months post op I'd say I was back to a normal diet. But I did learn to avoid foods that did not digest well such a some kinds of raw veggies and nuts. Each person has to listen to their body. It will let you know what it needs. If a patient is having difficulty with digesting foods, just talk to you doctor. There are oral enzymes that can be taken that are very helpful.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 13, 2023
In reply to @jadedprincess "There was about 3 months of forcing down a liquid diet. But after that I began..." + (show)
@jadedprincess

There was about 3 months of forcing down a liquid diet. But after that I began with a "bland" diet of anything that sounded good. At about 5 months post op I'd say I was back to a normal diet. But I did learn to avoid foods that did not digest well such a some kinds of raw veggies and nuts. Each person has to listen to their body. It will let you know what it needs. If a patient is having difficulty with digesting foods, just talk to you doctor. There are oral enzymes that can be taken that are very helpful.

Jump to this post

Hello @jadedprincess

I appreciate the information you and @ahtaylor provided. It is obvious that each person's post-surgery diet can be different depending on the type of surgery and how your body responds.

From your post, it sounds like you are taking some oral enzymes. Would you share, as you are comfortable doing so, what enzymes you are taking and how they are helping?

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pete1962 | @pete1962 | Feb 18, 2023

Hi @jadedprincess

I had a Whipple in Mar 2019. Had to stay in hospital for a extra 10 day due to internal infection. Started to eat normally after about 1 week at home, was back at work early months 3. Since surgery I am more often constipated which is a bit annoying but managable.

The original drain was not a big issue for me but I had to get a 2nd drain due to that infection which was very painful (they drained over 1 Ltr puss out of my body).

Good luck with your surgery!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 5, 2023
In reply to @jadedprincess "There was about 3 months of forcing down a liquid diet. But after that I began..." + (show)
@jadedprincess

There was about 3 months of forcing down a liquid diet. But after that I began with a "bland" diet of anything that sounded good. At about 5 months post op I'd say I was back to a normal diet. But I did learn to avoid foods that did not digest well such a some kinds of raw veggies and nuts. Each person has to listen to their body. It will let you know what it needs. If a patient is having difficulty with digesting foods, just talk to you doctor. There are oral enzymes that can be taken that are very helpful.

Jump to this post

Hi @jadedprincess

It has been a while since you last posted and I was wondering how you are doing. How are you feeling these days? Is your eating plan beginning to normalize?

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