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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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siosal | @siosal | Feb 8 10:28am
In reply to @thawk32 "I’m currently doing radiation for 28 days at Mass Hospital in Boston. My medical team of..." + (show)
@thawk32

I’m currently doing radiation for 28 days at Mass Hospital in Boston. My medical team of surgeon Dr. Fernandez radation doctor Dr. Hong had said they had great success with having radiation prior to surgery. I was wondering who you saw at Mass General and why they opted to do radiation after surgery. Hope you’re doing well.

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I just met with dr Fernandez. How did it all work out. I have an interductal mucinous cyst. He does not see cancer but we are waiting for mri results,. He seems to think there are more cysts. How did it all work out for you. I thought he was pretty fantastic. .Still pretty nervous though

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1 reply
skiball | @skiball | Feb 8 3:04pm
In reply to @siosal "Hi I just found this. I am being watched for IPMN in tail. 2.2 cm. Surgeon..." + (show)
@siosal

Hi
I just found this. I am being watched for IPMN in tail. 2.2 cm. Surgeon thinks mri may show more cysts, he wants to watch and wait depending on mri results that we will have in a couple of days. What is your story pre and post surgery? Thank you.

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Hi, to date I have had no surgery. I have an 8mm dilated main pancreatic duct, found incidental to a cyst on my colon, diverticulitis. I was found to have it in 2013 when I had a kidney stone but was never told about it until 2022. I have an MRI with contrast every 6 months and (knock on wood) nothing has changed in 12 years. I have had a few ERCP's with nothing found, they have stopped using them for me anyway as it could cause pancreatitis. I hope I have been of some help. These issues can be alarming and scary.

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skiball | @skiball | Feb 8 3:09pm
In reply to @siosal "I just met with dr Fernandez. How did it all work out. I have an interductal..." + (show)
@siosal

I just met with dr Fernandez. How did it all work out. I have an interductal mucinous cyst. He does not see cancer but we are waiting for mri results,. He seems to think there are more cysts. How did it all work out for you. I thought he was pretty fantastic. .Still pretty nervous though

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I think you are in very good hands if you are in need of surgery. I may have mentioned I saw Dr Fernandez partner for a second opinion as to what to do. He seemed to be recommending having a proactive Whipple but I opted not to do this given the length of time I have had this.

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siosal | @siosal | Feb 8 4:17pm
In reply to @skiball "Hi, to date I have had no surgery. I have an 8mm dilated main pancreatic duct,..." + (show)
@skiball

Hi, to date I have had no surgery. I have an 8mm dilated main pancreatic duct, found incidental to a cyst on my colon, diverticulitis. I was found to have it in 2013 when I had a kidney stone but was never told about it until 2022. I have an MRI with contrast every 6 months and (knock on wood) nothing has changed in 12 years. I have had a few ERCP's with nothing found, they have stopped using them for me anyway as it could cause pancreatitis. I hope I have been of some help. These issues can be alarming and scary.

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Thats a good story given how frightening the pancreas can be
ERCP?

Thank you for responding.

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siosal | @siosal | Feb 8 4:20pm

The endo dr sent me to dr f fir p/tail surgery. Hes not convinced that is the best idea.
The whipple sounds brutal. Since my cyst is on the tail i dont think thats what he will do if/when i have surgery.
The KRAF mutation tends to lead to cancer but i have no cancer markers at this point.
Thank you.

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1 reply
skiball | @skiball | Feb 8 8:42pm
In reply to @siosal "The endo dr sent me to dr f fir p/tail surgery. Hes not convinced that is..." + (show)
@siosal

The endo dr sent me to dr f fir p/tail surgery. Hes not convinced that is the best idea.
The whipple sounds brutal. Since my cyst is on the tail i dont think thats what he will do if/when i have surgery.
The KRAF mutation tends to lead to cancer but i have no cancer markers at this point.
Thank you.

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From all that I have read, the involvement of the tail is less serious than the main duct. But being a lay person with no medical background, it is my interpretation. The ERCP is a combination endoscopy/XRay of not just the pancreas, but liver, gallbladder etc. Best if you read it from a qualified source. Please stay in touch if you can, we can all support each other in a lot of ways.

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siosal | @siosal | Feb 8 10:12pm

Hi
Yes the tail is not as bad as main part
It still could require a splenectomy.
I will keep in touch. I dont know a soul who has gone through this. So its wonderful that you would like to keep in touch
Thank you. .

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