Re: Any good Pancreas Cancer centres/Surgeons in UK?

Pancreatic cancer

A group for anyone affected by cancer of the pancreas to get together, ask questions, share experiences and support each other.

Any good Pancreas Cancer centres/Surgeons in UK?

No. of entries: 54 | No.of favourites: 0 | Posted on 06 Feb 2011 10:10
  • I'm sorry to hear abut your father Martine. Your post was not long winded by any means it helps to talk. Sorry things didn't go well for you guys after surgery.

     

    I'm now pretty sure my parents will be going ahead with an operation if one is offered that sounds satisfactory. They're definattly going to the consulation and I am hoping they'll book a translator to avoid any mix-ups.

    I have to judge our case on it's own merits. The cancer is pretty localised and central and I believe it's only classed as advanced because it's on the artery. Everything else seems pretty clear. My dads fit and relatively young, he has a lot to live for and a good support structure.

    I believe one can live without both the pancreas and spleen albeit with some complications so I feel I have excellent reason to remain positive we're in the lucky few.

    I appreciate your guys replies but I am not sure how wise it is to continue to read this from a morale point of view.

    Guess I'll be back on after the operation <3

    Tom

  • Dear Tom,

    Thank you.

     

    I think you are very right, trying to get onput from other people can be good and bad. Every situation is very unique and although it helps to hear other experiences, it will never match what you may experience.

    You have every reason to stay positive, your dad couldn't be in better hands as I said before so I wish him and the rest of the family all the best for the surgery.

    Let us know how it goes. Also if you need someone to help with translation at any time, I'm more than happy to do that. I'm from Luxembourg and therefore fluent in German.

    All the best,

    Martine

  • Tom,

    No you're not being insensitive at all.  But, I was just offering a word of warning that it may not all be plain sailing.  Each person is different just as each has a different disease in a way- different stage, different spread, different body.  If he will have the Whipple, I'd advise you to read people's experiences of it. Cancercompass has an extensive following.  I'd advise on high doses of omega3 prior to the operation as it's been shown to slow down weight loss.  Did they say they'd do a Whipple, or will they just remove the pancreas if that's possible?

    Martine

    I'm sorry to hear about your father. 

    Re Mubarak, he was the only reason we went to Heidelberg, which must have been about a month after your father had been there, Martine.  We'd read about his operation in the papers and it sounded very similar to my father's situation and if fact it was as they both had duodenal cancer as opposed to pancreatic (though of course the Egyptians have denied that his condition was anything other than benign) and that got me researching and then us opting for Heidelberg.

    Please let us know how it goes Tom.

     

    xxx

     

  • Quick update.

    They're removing pancreas, gall baldder, spleen and some of the stomach on monday. If it hasn't spread elsewhere this is amazing news. The work they're planning is more than I hoped for.

    Maximum chemo after the operation to be on the safe side. I will drag him through it by his tonsils if I have to.

    The NHS has to change their policy, they wrote my dad off I'm glad we didn't just give up. I will petition till they define cases such as my dad worthy of more treatment. Paid his taxes all his life straight as a di and then .|.. from the NHS.

  • There is no safe surgery, and I hope you have understood how extreme this particular proposed surgery is. It's not an NHS issue. From your previous description of the tumour being around two major arteries, there are plenty of surgeons who would not have risked this operation. You have found one who is prepared to try. Good luck, but wait for the outcome first. The mortality from pancreatic surgery may have reduced to tolerable levels, but the morbidities remain very significant. 

  • It is an NHS issue.

    If it wasn't a funding issue they'd have asked us what we wanted to do and if we were prepared to chance it.

    If it was a skill issue or lack there of due to the surgeons available in the NHS that's still an NHS issue.

    The NHS wrote my dad off. It's that simple.

  • Nothing in healthcare is that simple. You do not seem to be recognising the risk issue, which two people on here are trying to point out to you.
    We are very lucky to have skilled pancreatic surgeons in the UK who are coordinated into highly specialised centres. One of their most important skills is knowing when to recommend not operating.

  • I'm all too aware nothing is that simple Mark.

    But the NHS wrote my dad off and it is that simple. You were not there and you didn't hear what the guy said. They did not say "we'll start chemo and if that gets it down to 4cm we can start radio and if you're really lucky and it shrinks to 2cm or so we'll operate" to give a glimmer of hope, they gave him a year to live and told him all they could do was make him sick with chemo for 6 months.

    If the surgeons in the UK are so good why do people with money or celebrities etc almost always go abroad these days?

    The NHS let my dad down, they offered him 0 alternatives. They did not offer the chance of any trials, did not bring up 32P Biosilicin, self purchased and administred nelfinavir, CAAT or MPA/Visualisation. They did not suggest going elsewhere for a second opinion or surgery.

    If you have an exotic car and take it to joe bloggs mechanic who says he can't rebuild the engine you don't scrap the car you find a specialist mechanic who can rebuild the engine.

    I am aware of the huge risk in operating and do not need my morale lowered by you pointing that out every chance you get. If there was even a mild hope for an increase to longevity or pain relief in such a dire case as this then surgery should have been offered. It was not. The NHS failed him and god only knows how many other people who don't have 40 grand laying around.