Whipple procedure

In September it will be 4 years since my Whipples (hat will be a month after my 80th birthday). I had some of the post operation problems that one gets warned are possible and so was in Adenbrookes for almost 7 weeks and was sent home with a liquid feeding machine attached which was to be operated by my wife after a training session thankfully that was removed about a month later as her cooking got me back to eating more normally. I now eat just about anything although probably less than I used to and now my BMI is within the "good" range. Sometimes I think I don't get the Creon dose quite right but nothing too drastic happens. My main problem is a hernia along part of the operation scar which the consultant will only do something about if it causes problems. The annual CT scans have all been clear so far and I am due a telephone consultation on a few weeks. Given how every surgeon said how difficult that operation is (one said harder than a heart/lung transplant) I think it sounds like you are doing OK, but it takes a long time. 

Hi Dave 0

I read your post with interest as my consultant has told me that if endoscopic surgery is not possible due to the position of my tumour I will need a Whipple. As I live in Norfolk am not sure if this is the case if I should ask for a referral to Addenbrookes where you had yours done. I didn't not have any contact names of surgeons carrying out this procedure either at Norwich or Addenbrookes and wonder where you can obtain this information from as your experience, albeit long and complex seems to have had a positive outcome with time. I hope as the days go by you are feeling stronger Dave. Sincerely Kimm

Hi Kimm

I was referred to Addenbrookes from Bedform Hospital where they had hoped endoscopic surgery could be done. I had had trouble with gall stones which was relieved endoscopically at Bedford with placing  a stent, but they took biopsies of some polyps in my duodenum as part of the endoscopic procedure. Six weeks later (it was Covid time) I got a phone call saying the polyps were cancerous albeit a slow type. After a while I had an appointment at Addenbrookes and saw Raaj  Praseedom  who is described as Consultant HPB- Transplant Surgeon. He was extremely good to talk with and explained the operation in detail especially the risks. Those risks were alarming but really there was no choice except to have the operation which at Addebrookes they do over 100 a year he said. The depressing statistics he wrote on a sketch (which I still have)showing what would be done and I am reluctant to repeat them, but if they are accurate then they may help you make a decision. If  you don't want to see them just stop reading here. Remember what I was told about the operations complexity which I put in my earlier post

Operation time usually 6-8 hours (mine took 12) it seems the worst bit for them is reattaching the pancreas as it is like a sponge and stitching that is very hard.

Risk of death during operation 3 in 100

Post operation complication risk 1 in 4/5 (I was one of those)

Chance of survival with nothing done was zero with time, with only chemo perhaps 8% but with the surgery and chemo if required about 70%. I took the 70% choice there and then. So I lost my entire duodenum, my gall bladder and about a third of the pancreas and on 17th September it will be 4 years ago.

If you do read this far I hope it helps. I certainly feel I made the right decision but can't be sure if it is getting old or the missing insulin that has slowed me down. The best thing that came out of it was the care I was given once I did get home as the strain on my wife must have been really hard for her. 80 mile round trips to Addenbrookes with limited access due to Covid, and loads of effort once I was home like having to get up a 4:00am to start the feeding machine etc.. At least we have now had out Golden Wedding anniversary.

If you need any other info just ask.

Dave

Hi Kim 

I had my wipple operation in January this year.  Like you I had no choice, I had become very ill due to jaundice.  The operation takes months to get over but there is light at the end of the tunnel.  I never thought I would eat properly again, but slowly that improved.  I am half way through chemotherapy which is a challenge.  For me too much information was not good, it can send you into a spiral of worry.  I’m not suggesting total ignorance but try not to google too much.  Thinking of you on your journey and try to take each day as it comes good or bad.

Hi Dave firstly many congratulations on celebrating your Golden wedding anniversary, a wonderful achievement!

It was very kind of you to reply to my post as it has been four years since your procedure which was exacipated by COVID and travelling issues for your wife. 

My late husband had a brain tumour removed at Addenbrookes and I knew that they were a centre of excellence wit regard to neurology but as this procedure is so rare it's quite difficult to get names of surgeons who do this procedure on a regular basis and who inspire confidence. 

I did read your post to the end as I feel that I still know very little and it sounds like your surgeon was very open and upfront with you.  I have an ultrasound by endoscopy in Norwich this Tuesday and the radiographer /doctor carrying it out will let me know if the 3+cm tumour on my duedonum can be removed endoscopically with a stent fitted  or if in fact I will need to have the Whipple.

I agree with your thinking on proceeding especially as the surgeon has said sooner rather than later. This has come totally out of the blue as I was just having a follow up endoscopy after three years to check my acid reflux was under control and the tumour was found incidentally. I have had scans on my chest and abdomen and I hope that I will be able to make a quick and informed decision after Tuesday about what happens next. Thank you for taking the time and trouble to reply to my post , something which I will hopefully be able to do for others once this crazy waiting is over. I will keep you posted, best wishes, Kim 

Hi Jester many thanks for your kind reply to my post. I am pleased to hear that your Whipple surgery went well and that you are now half way through your chemotherapy and beginning to eat better. You have been very open and honest about the whole thing which I appreciate. I must admit I have been looking up so many things because I really don't know what is going on and am very anxious. I will try to steer clear of stuff now until next Tuesday when I have my ultrasound endoscopy and have a greater idea of the next steps. I will keep you updated meanwhile look after yourself and thanks again for you help and advice.

Sincerely 

Kim

Kim, I hope it all goes well for you and you don't need the whipples, but as you will have seen if you do it is NOT the end of the world and although not much fun recovery is much more than just possible.

Dave

Hi Dave thank you for your encouraging reply. I too hope and pray that the Whipple will not be needed but as it has been mentioned I felt that I wanted to know more about what it could mean for the future to be able to preplan. You have helped me with this more than anyone and I am extremely grateful. I will update you after my next consultation. Again my thanks to you and this forum . 

Kim

Hi Dave just to let you know that after my ultrasound by endoscopy yesterday the tumour on my duedonum has spread to the bile duct so a Whipple operation is needed. The team will be having a meeting soon to arrange when as it will either be at Addenbrookes or perhaps the Royal Marsden. You have helped me to prepare well for it and have just ordered some new nightwear for after the surgery so thank you.

Well I must admit that I don't understand their logic, but I would assume they have their real reasons that they suggest the operation. It was the same when I had mine as I just knew about cancerous polyps in the duodenum. After the op they said they removed the gall bladder as well and it was only in a letter a year later that pancreatic cancer was stated. It is certainly not an operation they would want to do unless they believe it is really required. I think that actually makes a giving consent action by yourself easier to make. 

The aftermath will not be much fun, but the alternative would be much worse and you should be OK afterwards even if it takes a while. 

I hope you have people who can visit you while you are in hospital and afterwards as such visits do make a difference (after mine due to Covid visitors were by  appointment only and limited to just my wife). I am perfectly willing to chat on the phone if that will help you before and/or after. If you want that either send me your phone number or I can give you mine or just keep using this message system.

Anyway I hope it all works out and post operation and recovery time you feel like me able to do just about everything you did before albeit perhaps just not as much (although that is also probably age catching up on me).

Dave