Whipple surgery - any experience

[user2207]

Does anyone have a personal (or relative) experience of Whipple procedure for pancreatic cancer. My father was recommended its modified version (when the stomach is left intact) but as this is considered such a risky operation with a significant chance of complications (even death), he is thinking if it is really worth it. It would be interesting to hear any personal experiences.

I know of a very fortunate woman whose GP diagnosed PC early enough for her to have the whipple procedure. She's alive because of it. She lives her life to the fullest. She was approx 76 when she had the operation.

I don’t know of anyone who has had the whipple procedure but I do know that PC is often inoperable, and usually very aggressive with short life expectancy. On that basis, if I were diagnosed and told it was operable I would roll the dice because the outcome is otherwise so bleak.

I’m so sorry your father has been diagnosed with this horrible cancer.

My mum had a pancreatic tumour, caught early, had the Whipple procedure. It took her a little while to recover, 3 months or so. But now over 10 years on she’s absolutely fine, although she does have to watch her sugar intake.

My mum’s stomach was left intact too

My Mum had it at 79, she is now 81 & doing well. There is a Facebook group called UK Whipple Warriors

Thank you everyone, this is very encouraging. We were told that only 20% of those diagnosed are seemed to be suitable for it and considered fit enough to cope with it.

I know two people who’ve had it. One 16 years ago and the other about three.

And thank you for the reference to the facebook group - we have only just found out that this is an option, so did not have time to search for groups, etc.
The doctors are recommending it but are very open about possible complications and risks, including the mortality because of the surgery itself. But I guess, as previous poster said, looking at the statictics for pancreatic tumours in general, it seems to be a real chance.

Hi OP, I’m sorry to hear about your dad’s diagnosis.

I was diagnosed with stage 3 inoperable pancreatic cancer in November last year (after many, many trips to the GP where I was repeatedly fobbed off but that’s another story). I was 53.

I was told we had a very small window before progressing to St 4. I was offered 6 sessions of Folfirinox chemo in the hope of shrinking the tumour enough to make it operable, although my oncologist said it was very rare that this worked. I completed the chemo and completely changed my diet (very low fat, low carb, no dairy, no upf, no sugar and eat lots of cancer “fighting” foods). The scan following chemo showed the tumour had shrunk enough for me to undergo the whipple. I was so relieved that this was now an option.

I finished chemo in Feb and had the whipple in March. There is no mistaking it is a massive operation which takes some getting over. I am still recuperating. I know how your dad and you must feel about the risks and side effects. My worst side effect has been diarrhoea which I’ve suffered with every day since March. It has made me quite weak as I’ve lost 4 stone and I’m not as active as I would like to be. I’ve not suffered with any leaks, infections or anything and the actual incision has been no trouble at all. I was in ICU for 5 days and post-surgical ward for another 7 days. I’m now on another 12 weeks of mop up chemo.

At my follow up appointment in April my surgeon told me they had removed all of the tumour with clear margins and they’d taken 47 lymph nodes (a lot!) which were all clear. He said if he’d been told this would be my outcome he would never have believed it.

So, I would say to your dad go for it. It is life saving but life changing surgery without a doubt but in all honesty, what is the alternative?

How old is your dad and is he fairly fit and well apart from the cancer? Have they staged it? If he does decide to have the op I would say to try and get as fit as possible beforehand, and to eat plenty to limit the weight loss (appreciate this might be difficult for him though). Where would he have the surgery?

He is very lucky (if you can call it that) to have been offered the op, as sadly many are diagnosed far too late for this to be an option. He has a chance, and although this has been the hardest fight of my life, that is exactly what I was doing, fighting for my life.

Apologies if I’ve gone on a bit about myself but I know it is so important to read of real life experiences. I second a previous poster’s recommendation to join Uk Whipple Warriors on FB, I think there is another page for carers/family too which my daughters joined. The nurses at Pancreatic Cancer UK are also brilliant and there are many people’s stories on that website too.

Good luck to you both, I’m fairly new on here and not that tech savvy but would be more than happy to share more about my experience if you would like to know more.

@Swimmingmin thank you so much, I really appreciate all the details. My dad is 70 and is in excellent physical shape otherwise, with healthy weight. He has considered himself fully fit and healthy until 3 weeks ago when he had a heavy feeling in his stomach and jaundice. He had full set of tests last week and had a stent put in to keep the bile ducts open until the op. So far no other tumours were detected (but obviously hard to say without biopsy of the lymph nodes after the op), and the doctors think that he is suitable for surgery.

Ultimately only your father can make that decision.
Just be there, offering as much support and love as you can. I’ve been there with my mum, it’s hard. Wishing you all the best 💕

My mum had bile duct cancer about 5/6 years ago and had the whipple procedure to remove the tumour. She was 75 at the time and she's still going strong now at 81. She had to go into ICU for 24 hours as she needed certain drugs and then was in hospital for about a week after. She had a bout of chemo afterwards as well which was tough for her.
She has to take creon tablets with every meal as she's had a chunk of her digestive system removed but she's doing well.
She certainly would have died without surgery.

For balance, my father had the Whipple for pancreatic cancer at the age of 63 and died a few months later when the cancer did not respond to chemo

It's a big operation but he is very lucky to be offered it at all as so few are eligible.

Even if his cancer comes back he will live a lot longer than people who never had a Whipples so it is worth doing.

@Swimmingmin
you've been through so much, it’s amazing what our bodies can survive really. Just wondering if you are taking Creon to help with that diarrhoea?

user2207 no problem. Good luck 💜

MissyB, thank you, it’s been a rough ride for sure and I still have a long way to go.

I take neutrozym (an alternative to creon), codeine, loperamide and Colestyramine for bile acid malabsorption, I think that’s about all I can take for now. I’m hoping it will start to get better when I finish chemo.

Sorry I know nothing about the whipp!e procedure but creon contains enzymes which helps with digestion ,as the pancreas produces, these enzymes, my son was hospitalized with acute pancreatitis, a few months ago and it was necrotic,so he has no functioning pancreas ,he now has type 3c diabetes which is caused by damage to the pancreas (which is treated as type,1)a few peoples or on the face book group.im.on have for type 3c diabetes have had the procedure .

Sorry to hear about your father, Thatisthewayaha,
we are fully aware that it is impossible to predict the overall outcome. Even the surgery risk is relatively high and we have been told about various complications that can arise during and after the surgery.

Do be aware that the Facebook group can be rather depressing. I guess people only post when they have issues to rant & get advice. The Whipple is an amazing opportunity for a chance. Chemo will most likely be needed afterwards, but it's a chance to a cure

I hope this doesn't come across in the wrong way and I'm not meaning to be negative during what must be an incredibly difficult time but I just wanted to offer my experience of my sister's Whipple procedure which unfortunately wasn't such a success in the long run.

My sister was diagnosed with late stage pancreatic cancer in 2021 and was offered a Whipple procedure due to her age and the size and location of the tumour. The operation itself was a success and they were confident they had removed all of the tumour along with a lot of lymph nodes.

They followed up with chemotherapy as a belt and braces approach which my sister reacted very badly to. She lost a lot of weight very quickly and I know she struggled with getting the balance of enzymes correct to digest her food so she felt constantly sick which put her off eating further. Sadly she had to abandon the chemo after 8 out of 12 treatments. The cancer returned not long after and her body was so wasted by this point that it quickly took her. She was 51.

We're glad she had the Whipple as it gave her a chance and she was only 50 so had to do everything she could to be around for her two teenage children. The procedure itself was a success so I wouldn't knock it at all but her recovery was quite challenging and along with very invasive chemo and obviously aggressive late stage cancer it was too much for her. I strongly hope your father's prognosis is more positive. It's an awful disease.

I know my sister and my Mum took great comfort from the Whipple Warriors group and my sister liked to speak to other people actually going through the same thing as her and there were some incredible success stories on there. Apparently Chris Rea was diagnosed with pancreatic cancer and had the procedure in the 80s so there are success stories out there so please don't take my sister's case as the likely scenario as it may not be the case for your father.

Best of luck to your family and sending lots of love.

I've been to a lecture from a surgeon who does Whipples who was explaining all the advances that have been made doing the surgery and recovery - so while it is still a very major op, it is not the same as it was when I was training 30 years ago.

He was also explaining that even if the cancer comes back, the prognosis is better for those with Whipples than without. Anecdoctally I think this is true from the patients I see with pancreatic cancer - it is such a horrible disease that most don't live more than a year but I have patients who have had a Whipples who have gone on much longer.

My mum had a whipples 13 years ago. Caught early stage 2 PC. It was successful and she recovered quickly. Sadly the cancer returned 3 years later but we had 3 precious years with her that we wouldn't have had had she not had the procedure and she had an excellent quality of life before she got ill again.

I really hope it does get better for you 🤗

My grandfather had it in 2009 aged 70, it was successful and lived another 14 years until early this year when he passed away peacefully in his sleep of old age. We were so lucky to have those 14 extra years with him as he had weeks to live without the surgery. Hope all goes well.