Forums

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 | Posted on 06 Feb 2011 10:10
  • Hi Tom

    so sorry to hear about your father. KF has provided some good advice. It may be a good idea to talk to the specialists at your father's centre and some of the cancer and specific pancreatic cancer charities or look through their web-sites www.pancreaticcanceraction.org or www.pancreaticcancer.org.uk

     or the Pancreatic Society www.pancsoc.org.uk before proceeding.

    My husband age 48 had a 6cm tumour inoperable in the body of the pancreas. he was in severe pain as his main symptom and judged inoperable. He had gemcitabine and cisplatin chemotherapy which removed most of the pain, and reduced the tumour size - not enough for surgery but that was considered as an option. Of course the pain started to come back and the tumour to regrow once he came of chemo but he had further course and then radiotherapy and a 3rd line treatment and survived 27months without surgery and had reasonable quality of life - regularly walking 10miles and we travelled to New Zealand for a holiday. Not all patients respond to chemo of course. There are now trials or chemotherapy and radiotherapy before surgery that have on occasion made people eligable for surgery after treatment - even with tumours as large as 6cm - although with tumours affecting the coealic axis that may be harder

  • Thanks for the input everyone.

    I'm sorry to hear about your father KF and your husband  SB

     

    It's such a tough call of what ifs and maybes. I think our primary concern is waiting so long to see if the chemo is having any affect prior to surgery. Our oncologist (which frankly I didn't much rate as he didn't know how long my dad would have to spend getting chemo via a drip and couldn't make up his mind if it was metastatic or locally advanced till I quizzed him) suggested the % of people who responsed to chemo was around the 40% mark. My dad asked me if I'd bet on those odds and truthfully; I probably wouldn't.

     

    I hate to seem insensitive but if you remove hindsight from your perception of what to do how would you move forward?

    If he has chemo and it works, brilliant! better chance of greater success from operation. If he has chemo and it doesn't help we've possibly lost our window for the operation. 40% isn't good odds.

    Tom.

  • Dear Tom,

    I'm sorry to hear about your father, as you may have seen I posted two messages last year regarding Dr. Buechler.

    First I would like to say that unfortunately my father passed away in August last year, litterally 12 months after his surgery.

    When he went for surgery, we didn't know that it was a tumor, the doctors were under the assumption it was a cyst, so he did not have the possibility of choosing whether to have surgery or not. He went in a "healthy" man and came out with a diagnosis of stage 3 pancreatic cancer. Out of 13lymphnodes removed. only one was metastatic, but one is enough unfortunately to spread it around.

    The surgery was well done, he spent three weeks in intensive care and then went home to start chemo. He responded well but things started to go wrong in February 2010 when he suffered internal bleeding. To cut a long story short they spent two months before finding out it was unrelated and he had surgery to remove a bit of his intestine (he'd had the e.coli bug as well which may have been the reason). It went downhill from there as he was too weak to have any more chemo so the cancer exploded.

    So, now that we have had the hindsight, I can tell you that often we wonder whether he would have had a better quality of life even if shorter by just having chemo and we are coming to the conclusion that he would probably have wanted to have the surgery anyway as it feels like you want to explore all possibilities. I think if the surgery had been performed three months earlier he would have had a better chance.

    If you are opting for surgery, you could not be in better hands than with Dr Buechler. It may not be a reference but Mubarak has also been operated by him. He was there at the same time as my dad.

    Just be aware that they are very keen on improving survival rates and therefore are known to perform surgery on people that noone else would "touch". Then again a lot of people also go there after having had botched surgery elswhere.

     

    They also do trials and wanted to enrol my dad into one (CAPRI II) after surgery but we refused as it would have meant staying there for a few months and after doing research I felt it was a reverse trial, i.e. they were trying to identify if the same results could be achieved with less toxic treatment rather than seeing if more treatment would achieve better results. The risk of falling into the group that is tested on the most toxic treatment felt too great for us.

     

    Unfortunately your dad, together with his family is the only person able to take a decision. I'm sure my dad would go for surgery again if he was in front of it but then again, I can't say for sure. I read with interest the email by sb6y whose husband obviously had a very long survival by any standards and a good quality of life.

    If you opt for surgery, do it rather sooner than later, every day is a lost day. If your dad is really unsure, ask the hospital in Heidelberg to put you in touch with Dr Buechler's oncologist to have his views on chemo before surgery given the test results etc. I believe his name is Dr Jaeger.

    Good luck, sorry if my response was a bit long winded.

     

    Martine

  • 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.