December 14, 2009 at 8:06 pm #33659gavinModerator
I hope you can get somewhere with bringing your treatment forward and I wish you the best of luck with it. Keep fighting.
GavinDecember 14, 2009 at 5:38 pm #33658
You have given me lots to consider and other options after I chat to surgeon again.
Kris……good luck with fight with leroy and junior – I’m backing you all the way.
GerryDecember 14, 2009 at 2:51 pm #33657devoncatParticipant
Gerry, sorry about the aborted attempt.It had to be frustrating. I hope they can move that surgery up and cut out the little nasty.
Just to let you know…I called Edinburgh Royal Infirmary on Friday and the magnificent Prof. Garden is no longer there. I have googled and googled him with no luck so if any of our UK friends know where he went, please let me know. I love that man. You just felt at peace in his care.December 13, 2009 at 7:42 pm #33656
Gerry…..This brings up one of the most important things to consider:
How many whipple procedures has your surgeon performed? You would want someone who has multiple experiences with this type of surgery.
This leads me again to the importance of obtaining several opinions from those physicians familiar with Cholangiocarcinoma.
You might want to consider a consultation with:
J Peter A Lodge MD FRCS
Professor of Surgery
Clinical Director of Surgery
HPB and Transplant Unit
St James’s University Hospital
Leeds LS9 7TF
Tel +44 (0) 113 2064890
Fax +44 (0) 113 2448182
Prof. Brian Davidson
University Department of Surgery,
The Royal Free Hospital, Pond Street, London, NW3 2QG
E mail: b.davidson[at]medsch.ucl.ac.uk
Professor OJ Garden
Edinburgh Royal Infirmary
Also, there is King’s College in London (I believe that Laupe’s sister is being treated there as was Pauine’s husband Anthony. Another physician to contact is Dr Wasan’s at Hammersmith.
Just some food for thought.
MarionDecember 13, 2009 at 7:13 pm #33655
Glad to hear from you Gerry and that you are going to have a chat with the doctor. I just remember so vividly when after 2 weeks of healing the pancreas, the doctor came and said, “We can’t wait any longer, I am going to do a scan as I am sure the pancreas has healed enough to go in.” It was, he did and all was fine. I think also the long wait of “thinking” about the Whipple for months will be more upsetting then the actual Whipple. Hopefully you can have your chat sooner than later. Good luck.December 13, 2009 at 6:43 pm #33654
Lainy/Marion….As regards your queries concerning the necessity for chemo, I wish to clarify the treatment plan adopted by the Surgeon – the chemo is entirely for preventative reasons, to treat the tumour while we wait for the inflammation in the pancreas to clear and proceed with the whipple operation. There is no back-log in the health care system or any other reason for the 4-month delay. I suspect the Surgeon is concerned that if he were to bring forward the operation , the inflammation would not have cleared and another unsuccessful attempt to remove the tumour may be a backward step.
Like you, I would prefer to go ahead with the operation much sooner and I have now decided to go back to the surgeon and discuss bringing the operation forward, (which may eliminate the need for chemo). I’ll keep you informed and thanks again for your queries/concerns as it helps to inform my opinion when I next meet the surgeon.
Take care……….GerryDecember 11, 2009 at 11:57 pm #33647
Oh, gosh, I am so sorry but I have to chime in again here. After Teddy’s Whipple 5, that’s 5 different doctors and surgeons said they would NEVER give him chemo as it would not help after a Whipple. His pancreas was totally destroyed but healed enough in 2 -3 weeks for the surgeon to be able to cut the head and proceed. I am so sorry but I am very concerned having already gone through this. I just cannot conceive 4 months.December 11, 2009 at 11:27 pm #33648
Gerry….I am also wondering whether the surgeon feels chemo to be a preventive measure due to the post attempted whipple procedure.
MarionDecember 11, 2009 at 11:23 pm #33650
Gerry…..I assumed that the operation was delayed due to the healing of the pancreas but, I think that Lainy makes a good point. What is the time frame for a healing pancreas? Also, why chemo? Is it necessary only because the surgery date has been set for a later date? If so, wouldn’t it be smarter to operate at an earlier time? Or, is the healthcare system backlogged and this would be the earliest date available for this surgeon?
Sorry, for all the questions.
MarionDecember 11, 2009 at 10:58 pm #33649
Thanks all….Lainy, I hear what your saying regarding the importance of getting the operation completed as soon as possible. I’ve already got the surgeon down from 6 to 4 months and I’ll keep pushing him to get it completed as soon as possible.
GerryDecember 11, 2009 at 7:04 pm #33651
Gerry…I agree with Julia in that there is some very good news in your situation because, your tumor is operable. That in itself is something to celebrate. In fact, I think that you are the first poster who has been determined operable and yet the surgery had to be postponed due to an inflammation of the pancreas. Now you are able to enjoy the Holidays and gear up for a successful surgery in four months.
All my best wishes,
MarionDecember 11, 2009 at 6:20 pm #33653
We are sorry Gerry about the aborted surgery. My husband Teddy had his Whipple aborted also as the dye from the Endoscopy had leaked on it and destroyed it but they only waited 2 weeks to do the new surgery as the surgeon said he could not wait longer. I do not understand a doctor waiting 4 months when time is crucial with CC. IF he insists on waiting I would get a second opinion especially knowing the surgery can be done successfully. Someone else may do surgery much sooner and then perhaps you would not need the chemo. I would definitely get another opinion. Tell him you now had your rehearsal and now want the real thing!December 11, 2009 at 4:42 pm #33652lalupesParticipant
I’m sorry you’ve had to go through this delay & frustration, but I’m glad you’ve had the great news that it’s operable when the inflammation clears.
I send loads of good luck for your chemo treatment. Do you know, yet, which drugs you’ll be getting?
All the best
JuliaDecember 11, 2009 at 4:21 pm #2983
I’m just back from 10 days “break” in hospital. I was due to have a whipple but during surgery the surgeon discovered I had developed pancreatitis (an inflamation of the pancreas), probably caused when the stent was inserted by ERCP, 2 weeks previously. Naturally this was a disappointing result, but its clear from various updates on this site, that its not unusual. I had absolutely no symtoms and the inflamation did not feature on any of the scans. While I find this strange, the surgeon indicated that this was not unusual. Anyway, he wants to delay the whipple for 4 months to allow time for the pancreatitus to cure. In the meantime, I start chemo to control the tumor while I’m waiting for surgery.
On a positive note, the tumor itself is operable once the inflamation has disappeared.
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