To whipple or not to whipple? What is quality of life like after?
Am 56 years old in generally good health, though with type 2 diabetes. Have a very large (41mm) adenoma in my duodenum. It's not malignant but is of a type that will almost certainly become malignant, it will eventually block my duodenum. I also have abnormal cells in the bulb of my duodenum, so endoscopic removal is not an option. Surgeon is suggesting a full Whipple, without preserving the pylorus. Realize that I'm blessed that things are pre-malignant but also didn't have a Whipple on my bingo card at this point in my life. Whole process has moved very quickly - started with anemia in mid-October and am looking at a potential surgery date in January. Would appreciate anyone's perspective on living with a Whipple and on quality-of-life post recovery.
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@mnewland99 Yes, I live in Colorado Springs, Colorado procedure done at Memorial Central Hospital, it is part of the UC Health system. My surgeon was John Hamner. I’d read the advice to get a second opinion, but I was afraid that might delay treatment, I didn’t want to wait to get the bad stuff out of me. I researched that the surgeon and hospital were high volume for the Whipple. Things looked good, and I feel very fortunate and thankful that it all has seemed to go well. Chemo made me feel a bit wonky, some bad first bite pain for the first 4 cycles or so, and tired (daily naps), but no horrible side effects that I know others have experienced 😞 ( folfirinox-strong regimen!), and made it through the 12 rounds, though did have the dosage reduced for the last 5 rounds so my platelets could rebound and I could continue.
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2 Reactions@katieliz
That's great to hear! Do you mind sharing where you had your procedure done?
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1 ReactionI had the Whipple June 2025, so 6 months out. Bowel movements still wonky - not diarrhea but often loose and more frequent than before with sometimes not a lot of warning (taking Zenpep but dosage still being regulated, adding Vital Nutrients - non-prescription and much cheaper, can order on Amazon). I am 72 and was in excellent shape prior to PC diagnosis Feb. 2025. Definitely said yes to the Whipple, I wasn't ready to check out. Bowel issues are the only thing that I have to pay attention to these days. Pretty much recovered from Whipple after 2 months, and today no pain and I can do everything I did before, back to the gym, etc. Chemo makes me tired, but finishing that in 2 days. Looking forward to 2026! Would definitely make the decision to have the Whipple again, had partial removal of the head of pancreas, also gallbladder and duodenum. Seems my surgeon did an excellent job!
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5 Reactions@calvink69
That is a process that you'll work out in time, everyone is different.
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1 Reaction@jjmacc
Thanks for the reply. The question of pancreas recovery and enzyme replacement seems like a roll of the dice for most. Super happy to hear that this went well for you. Also great to hear about the good recovery outcome. To your point on post-surgery chemo, assuming the dont find something unexpected in my post surgery biopsy I hope to avoid chemo after that whipple, but time will tell.
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1 Reaction@luke333
Thanks. Will admit that non-normal bowel movements are towards the top of the list of recovery symptoms I'm not looking forward too. That said, its great to hear that you're having mostly good days. Gives me hope as to my outcome. Best of luck in your continued recovery!
@jnowling
Thanks this is helpful. Especially the bit about there not being anything you cant do that you couldnt do pre-whipple. Something for me to strive for!
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1 Reaction@jimkirby
This is super helpful. I don't have a whole lot of choice regarding the procedure. My adenoma is almost certainly going to progress to adenocarcinoma in the future - the only question is when and whether it fully blocks my intestine first. I am incredibly fortunate that it was caught before it was malignant and it would be foolish not to take advantage of the opportunity I've been given. That said, the procedure is pretty intimidating and I find myself spending (probably too much) time focusing on the things I will no longer be able to do after January. I will take your advice on being active and embracing the diet changes and creon with food. Best wishes in your recovery!
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3 ReactionsI was 65 and in excellent shape in 2023 when diagnosed with PC. After 6 months of Chemo followed by 3 weeks of radiation I had the Whipple in April 2024. It took about a month before I started to feel somewhat normal, and after 6-8 months I was back to a normal lifestyle and there isn't anything I can't do that I could pre-whipple. So for me it was definitely worth it. Best of Luck.
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7 Reactions@calvink69
I can only share my experience with Whipple. I had the Whipple procedure April 23, 2025, I did have Ampullary Carcinoma so my choices were limited. I am also a type 2 diabetic and was a little overweight. I must say it was not a pleasant experience, I spent 10 days as an impatient post surgery. I had a chyle leak but that was the only complication. With all the discomfort and recovery time, diet restrictions and general felt bad for several weeks. Once I embraced my new diet and having to take creon with food it was a quick recovery. By beginning of June I was able to walk several miles a day on the beach. My biggest issue was with the chemotherapy that started in mid June and ended successfully last Wednesday. I did loose 25lbs by end of June, total I am 33 lbs from surgical weight. The result was 40% stomach, gallbladder, head of pancreas, 1.5’ small intestine, Duodenum were removed.
If you choose to have procedure just embrace the recovery and diet changes. Being active after surgery is critical, it is tempting to be sedentary but just walking will help with discomfort after eating the first few weeks.
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9 Reactions