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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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c2pricorn66 | @c2pricorn66 | Aug 11, 2023
In reply to @shezza51 "Fingers crossed for him & peace of mind for you. Its all very scary Not familiar..." + (show)
Profile picture for shezza51 @shezza51

Fingers crossed for him & peace of mind for you.
Its all very scary
Not familiar with these terms what is an ERCP ? and a pNET please ?

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Endoscopic Retrograde cholaniopancreactomy-a procedure to diagnose n treat problems in liver, gall bladder, pancreas n bile duct. pNET means pancreatic neuroendocrine tumour

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shezza51 | @shezza51 | Aug 11, 2023
In reply to @c2pricorn66 "My hubby had CT for hernia repair and the specialist at the Gold Coast private found..." + (show)
Profile picture for c2pricorn66 @c2pricorn66

My hubby had CT for hernia repair and the specialist at the Gold Coast private found lesion in his pancreas, hernia has to wait. He's had ERCP and gastroscopy and confirmed pNET but encapsulated. PET Scan didn't appear to have spread. Eversince, lots of frustrations, stress, tears, fears and the outcome be like. He is having distal pancreactomy + spleen removed on the 6/9/23 at the GCUH, Australia. I'm his partner n a carer so taking time off from the hospital. As I read through peoples experiences, I am hoping that hell recover quicker,

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Fingers crossed for him & peace of mind for you.
Its all very scary
Not familiar with these terms what is an ERCP ? and a pNET please ?

REPLY
1 reply
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shezza51 | @shezza51 | Aug 11, 2023
In reply to @stevm "gamaryanne. Thank you. Agree sunshine, fresh air and walking are all good for keeping your spirits..." + (show)
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gamaryanne. Thank you. Agree sunshine, fresh air and walking are all good for keeping your spirits up. I mentioned that I was embarking on 8 cycles of chemo (oxaliplatin, irinotecan and 5Fu) followed by 28 rounds of radiation. Was wondering if you had any tips and advice that would help me get through. If I recall you had a similar regimen. Any advice from your experience would be appreciated. Regard Steve

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wow you ladies have sooo much courage yoir treatments & operations were wsyyyy eorse thsn mine
I think i was so shocked after 30+ years of good health that a 6.45 hrs op was horrifying--but i'm even mire shocked by what you are enduring. God bless or whatever works for you 😘🌹

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shezza51 | @shezza51 | Aug 11, 2023
In reply to @gamaryanne "Wow, you have been through it! My spleen also removed and my gallbladder. I expected to..." + (show)
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Wow, you have been through it! My spleen also removed and my gallbladder. I expected to be more prone to colds, viruses, etc but that hasn’t happened thankfully. Did you see a change in your immune system? Do you also see a nutritionist?
Best to you and adjusting to the new you!!

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Gall bladder too ?? wow
why was that ?? all during same op ? and how long ago ?

Theres very few dieticians in regional cities like mine and ive found Naturopaths suggestions are not really suitable for the double banger of diabetes and a poorly functioning pancreas. Op was Oct and in june i developed a fungal rash in 6 places. Weird !! Before that in march I got a Staph infection --giant multi headed boil from the "post splenectomy" Meningaccocal injection and in April had the last compulsory vaccine for Pneumonia-- which caused my remaining bit if pancreas to start throwing clots !!
My pancreas had centre removed & head & tail stapled together but tail is dying so it weeped a fluid that caused severe infection. Hence 3 overnighters in hospital. January, March & April
Now feeling pretty normal --except finding correct diet is tricky--conflicting advice
All the best to you too--we are lucky to not have had the dreaded sorry we cant help talk
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1 reply
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breezygirl | @breezygirl | Aug 11, 2023

Good luck ti you and your partner. My husband just had 50% of his pancreas removed and his spleen removed; plan on 6-8 weeks recovery but so far he is doing well! No heavy lifting but lots of walking helps.

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1 reply
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c2pricorn66 | @c2pricorn66 | Aug 11, 2023
In reply to @shezza51 "im in victoria australia" + (show)
Profile picture for shezza51 @shezza51

im in victoria australia

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My hubby had CT for hernia repair and the specialist at the Gold Coast private found lesion in his pancreas, hernia has to wait. He's had ERCP and gastroscopy and confirmed pNET but encapsulated. PET Scan didn't appear to have spread. Eversince, lots of frustrations, stress, tears, fears and the outcome be like. He is having distal pancreactomy + spleen removed on the 6/9/23 at the GCUH, Australia. I'm his partner n a carer so taking time off from the hospital. As I read through peoples experiences, I am hoping that hell recover quicker,

REPLY
2 replies
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gardenlady1116 | @gardenlady1116 | Aug 10, 2023
In reply to @shezza51 "lucky you to have laparoscopy !! I have the keyhole scars but it was open surgery..." + (show)
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lucky you to have laparoscopy !!
I have the keyhole scars but it was open surgery due to 1 cyst looking like 1/2 a cauliflower and entangled hence spleen removal which wasnt planned.
Out of hospital Nov 4 --back in for over-nighter due to internal infection mid-jan, mid march & 1st week of April
Blood pressure went from 133/76 to 205/111
Now its August and feeling more like myself
Diet still a challenge and now have Diabetes as part of stapled pancreas died & remainder cannot produce enough insulin
Still better than pancreatic cancer though
Keep dancing in your lounge & smelling flowers & admiring birds every chance you get--happy vibes are what we need
Love & Hugs to all on this challenging path
Cheryl

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Thank you for sharing your difficult story. Your courage is impressive!

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gamaryanne | @gamaryanne | Aug 10, 2023
In reply to @shezza51 "lucky you to have laparoscopy !! I have the keyhole scars but it was open surgery..." + (show)
Profile picture for shezza51 @shezza51

lucky you to have laparoscopy !!
I have the keyhole scars but it was open surgery due to 1 cyst looking like 1/2 a cauliflower and entangled hence spleen removal which wasnt planned.
Out of hospital Nov 4 --back in for over-nighter due to internal infection mid-jan, mid march & 1st week of April
Blood pressure went from 133/76 to 205/111
Now its August and feeling more like myself
Diet still a challenge and now have Diabetes as part of stapled pancreas died & remainder cannot produce enough insulin
Still better than pancreatic cancer though
Keep dancing in your lounge & smelling flowers & admiring birds every chance you get--happy vibes are what we need
Love & Hugs to all on this challenging path
Cheryl

Jump to this post

Wow, you have been through it! My spleen also removed and my gallbladder. I expected to be more prone to colds, viruses, etc but that hasn’t happened thankfully. Did you see a change in your immune system? Do you also see a nutritionist?
Best to you and adjusting to the new you!!

REPLY
1 reply
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shezza51 | @shezza51 | Aug 10, 2023
In reply to @gamaryanne "Hello, I had the surgery on December 7 laperoscopic. Totally the best way if one can..." + (show)
Profile picture for gamaryanne @gamaryanne

Hello, I had the surgery on December 7 laperoscopic. Totally the best way if one can find a surgeon in your area that is skilled to do it. I am now 6 weeks out and feel totally normal. I am still taking the enzymes and learning what foods affect me but as one could expect, it’s usually things with high fat( which we don’t need anyway)!
Happy to go into detail on recovery and post op pain if anyone is interested. Strongly recommend having a nutritionist available for consulting during this time.
Hugs to all!

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lucky you to have laparoscopy !!
I have the keyhole scars but it was open surgery due to 1 cyst looking like 1/2 a cauliflower and entangled hence spleen removal which wasnt planned.
Out of hospital Nov 4 --back in for over-nighter due to internal infection mid-jan, mid march & 1st week of April
Blood pressure went from 133/76 to 205/111
Now its August and feeling more like myself
Diet still a challenge and now have Diabetes as part of stapled pancreas died & remainder cannot produce enough insulin
Still better than pancreatic cancer though
Keep dancing in your lounge & smelling flowers & admiring birds every chance you get--happy vibes are what we need
Love & Hugs to all on this challenging path
Cheryl

REPLY
2 replies
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c2pricorn66 | @c2pricorn66 | Aug 10, 2023
In reply to @colleenyoung "Welcome @faithjlv. I moved your message asking for suggestions and advice prior to your husband's distal..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome @faithjlv. I moved your message asking for suggestions and advice prior to your husband's distal pancreatectomy with splenectomy to remove a neuroendocrine tumor to this existing discussion:

- What's recovery after distal pancreatectomy and splenectomy like? https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/

I did this so you can review the previous helpful suggestions made and to connect easily with fellow members who have been there like @ken240 @blw77 @skkirby @leighs2011 @jqleck @stageivsurvivor and more.

You're asking great questions like pain management, length of hospital stay and things you can do and be prepared for to make his recovery as smooth as possible. It is terrifying. I get that. I know members will have tips to help. Your husband is lucky to have you.

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Hello @faithjlv
I am going through what you have gone through. It's terrifying, stressful and lots of tears and fears. My partner is having an operation on the 6/9/23 same thing accidental findings through CT for his hernia. He's had donate, ERCP, MRI , Gastroscopy pNET and PET Scan showing it's encapsulated. How is your husband now ? and his journey ? Hope he recovered well.

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