Hi everyone, please visit our new look community site and let us know what you think. If you have any problems with the new site, you can still switch back to the current community site.
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.
It sounds like a full whipple where the entire pancreas is going to be removed plus the duodenum as well as the other organs you mentioned. This is a very extensive and drastic surgery with huge life changing consequences- many of which are not welcome.
If the tumour has wrapped itself around two major arteries- as my father's- you may not have negative margins after sugery. This in fact happened with my father where they managed to resect the portal vein-amazing feat in medical terms- and sort of pull off the tumour from another section. We think the cancer may have recurred there. Yes, they told us the day of the surgery that they had removed what they could see with the naked eye, but that there were no negative margins and so later we were told that really, there was a 98% chance of the cancer returning. Yes, they told my father he would need "light" chemotherapy after the surgery. Nothing about chemotherapy is light and we've had to stop it for such a long time before my father was strong enough to restart - it may already be too late. No oncologist we have seen after the surgery seems to favour chemotherapy as they don't see the point of it due to its limited curative value, and I 'm starting to agree with them. The point is, you cannot drag anyone by the tonsils to do chemo if their body just gives up or they find it too debilitating. I'm not saying this will happen to your father and I hope to God it won't, just be aware that it's no walk in the park for either patient or carer- I had to leave my job just to be able to support my mother through this.
Of course, one can only take the decision on the facts in hand and hope for the best. You are in a dilemma, I know,and sometimes you just need the slightest glimmer of hope, but please be aware of the consequences.
By the way, we saw a top hepatobiliary surgeon in the UK-Prof Nigel Heaton at Kings College Hospital-privately- and he recommended chemo to shrink the tumour before carrying out the operation. They tend to be more conservative in the UK, which may not necessarily be a bad thing, just a different approach. I can't say whether this would have helped my father as chemo might have weakened his already weak body so as to rule out surgery altogether. No one knows, and we just have to deal with the situation as it stands.
This is an awful disease with an awful prognosis and unfortunately, there is no other way of saying it. Yet, some people do survive for many, many years. No one knows.
Good luck and keep us posted.
I am reliably informed that there are people who come into the UK for pancreatic surgery which has been refused by surgeons abroad. So, it is not one way traffic, and it is not about 'the NHS'.I am sure everyone here wishes you the best of fortune in your particular choice.
The missus has pointed out that this may not be the place to discuss the ins and outs of the NHS seeing as some people may have only NHS as an option.
Thanks for the kind words I'll keep you informed.
Dear Tombladry, I agree with you the NHS also let my husband down. He was diagnosed with pancreatic cancer 2nd June last year, we was refered to Kings where the surgeon told us he needed Whipples but i didnt matter if he had to wait 4weeks or so. July 12th he operated and supprise supprise the cancer had spread to his liver. We were then told he had 6mths without chemo 18 months with.but they said he would have to wait 6wks to start chemo. We told the doc he couldnt wait 6wks. It was then agreed he could start earlier. Because Guys only use Gemcitabine that is what he had. The first course was every week for 7 weeks, then a ct scan, we were thrilled because the liver ones had shrunk by half. He then started the next course once a week for 3wks 1 weeks off.ect All the time since June my husband had complained that he couldnt eat as it felt like food was stuck in his oasphagus, no-one took any notice of this, his weight went from 14st 4lbs to 9st in about 4 months, then in November i realised it was severe acid that was coursing the pain and a simple bottle of Gaviscon sorted that problem out. The doctors should have done somthing about it months before. Then just before christmas another ct scan showed cancer had grown, was told they could try another chemo but it had never been tried on humans and the side effects could be very bad. The doc said go home you probably have months. We got christmas over and then 5th Jan he had a stroke, was told he could die, but within days my dear husband fought back and was then transfered to local hospital for rehab. From then on he went downhill, they wasnt giving him the correct medicine and he was in alot of pain, he went in that hospital on the friday and by the tuesday he begged me to take him home, he was in a ward with a man with MRSA i contacted the MacMillan nurse and she said if there was no medical reason for him to stay she would get him out, she didnt, so on the wednesday I spoke o/t and she said she would get him home. During the week I kept asking the doctor to help, asking him to please see my husband, all he ever said was he was busy, but on the wednesday he decided to do a blood test and said he had a chest infection so couldnt go home. I visited him that afternoon, he was fine could walk just holding my hand, his speach was good and was starting to get the use of his arm. I left him well. Next morning i phoned hospital about 9am,was told he was fine. I arrived at hospital just after 11am and my husband was dead. They said he had broncal pnuemonia. I know he didnt. I visited my husband it the mortuary every day and about a week later something made me look at the back of his head, he had cuts and bruising. No-one will tell me how it happened, dont know how he died, what time and many other questions that need answering.I am not going to stop fighting until I get answers, my husbands funeral is not until 15th Feb as there is a backlog, he will have been dead 5weeks. The NHS has let him and many thousands of others (as you say if you cant pay private). My husband suffered all because he was an NHS patient. I now say act on your instincts if in doubt act, dont let the doctors and nurses get away with anything. cas 1
I am deeply sorry about your husband. May he rest in peace.
I can understand your anger and yes you and your husband were treated awfully. What I have come to learn about cancer care-and I no longer live in the UK- is that the patient and the carer have to keep on top of their doctors. Oncologists are usually just one sided in their assessment, making it vital that a whole team of specialists assess the patient. This is something they excel in in Germany (certainly our experience) and I heard the US. In fact, the new integrative medicine approach is gaining a lot of ground there in the US where the patient is seen by the oncologist, internist and possibly a naturopath who all work hand in hand.
We have actually had to link up with a gastroenterologist ourselves who has overseen my father since his operation and to tell you the truth, we've been more impressed with him than with any of the oncologists we've seen, although things work better when they're all singing from the same hymn sheet.
The NHS has so many problems and when it comes to a disease such as cancer, yes it fails miserably.
I don't want to sound insensitive, but I just wanted to let you know that 4 weeks really don't make any difference when cancer is this advanced. My father suffered 6 months from pain before he was properly diagnosed- again nothing to do with the UK, where he was in fact diagnosed privately in 2 weeks- and we were told that even the 6 month delay did not affect the staging of his disease. This I don't believe. As for the scans, like you, my father's situation was actually discovered to be far worse after they opened up than any scan had shown. That is the problem with this location of the body and ultimately, it is the surgery that has the last say.
Once again, I am very sorry for your loss.
I have been wondering what to say for a while.
Yes there is a lot more that needs to be done to help pancreatic cancer patients worldwide both NHS and private which is why all the cancer charities and professional bodies and cancer networks are working hard to try to make improvements in patient care and communication and to improve survival rates
It would be good for the many posters on here to feed your experiences through to those bodies (as Mark and I do) to help to improve things for future patients as this is top of the agenda at present.
As Mark says many patients come to the UK for treatment from abroad and surgeons from abroad come to the UK for training and UK surgeons go abroad for training so there is constant feedback on skills and experience, many international meetings each year and a great deal of international collaboration. It is hard cancer and one of the keys to more surgery is earlier diagnosis. At the present time another key is all the pre-operative, intr-operative and after operative systemic or local treatments such as chemotherapy, radiotherapy and immunotherapy etc.
Whether to offer surgery is not an NHS v private issue. In the UK you can get the same surgeon whether private or NHS and many of the top surgeons are NHS only. It is not an issue of resources it is an issue of the opinion of the surgeon as to whether they think surgery will be beneficial to the patient. In general they think it is not beneficial to go through the trauma of surgery if they think the cancer will come back quickly and require further systemic or local treatment anyway. Also they are taking care to reduce the risk of mortality from the surgery.
Tom asked whether we would have done anything different in retrospect. At the time we did have opinions from the USA, UK and Germany including a masterclass of top international surgeons after the first round of chemotherapy and they all judged it inoperable but one would have done a total pancreatectomy if my husband really wanted it. However he wasn't very positive about it and said we would be like explorers going to the north pole. My husband had a laparoscopy which showed lymph node involvement so the surgeon then decided it wasn't worth doing.
The first surgeon was pessimistic and due to the pain my husband was in believed he would only survive 3 months and advised him to spend his time travelling the world. However the oncologist was more positive and suggested he would have 1-2 years if he responded to chemotherapy - which he did. As he was in so much pain travel wasn't a feasible option and we had done a lot of worldwide travel through work anyway - we had just come back from New Zealand visting family. Even the most optimistic surgeon suggested having no further treatment and going off to travel the world - what is it about surgeons and travel?
It is all a matter of presentation as the oncologist also offered the possibility of downstaging to surgery after treatment so there was hope - my husband was just 48 and very fit apart from the pain. Unfortunately in his case the delayed diagnosis of 18months meant he didn't become operable but others did and have done from various treatments - not many but at least a few.
I believe all patients should be given ealier diagnosis, hope and access to trials and the best possible care. That is where more funds are needed from the NHS and cheaper drugs from drug companies etc
Tom and his father has been given some hope and I cannot comment further as I have not talked to that team in Heidelberg about their surgical outcomes compared to the UK or the impact of their other treatment pre-during and post surgery compared to the UK. However I do know why UK surgeons make their decisions and it isn't to do with NHS resources but what from their experience is in the best interests of the patient. Do keep in touch Tom and let us know how your father gets on.
I should also have added that in the UK all treatment decisions in the NHS are made by a team - the multidisciplinary team - of surgeons, oncologists, gastroenterologists etc at the specialist centre for the region where the patient lives, However as a patient you unfortunately don't see them all together which can cause confusion and different opinions to be passed on to the patient. The specialist nurse or a key worker is supposed to coordinate the treatment and be the point of contact to help resolve any confusions or differences in opinion.
By the way Radio 4 casenotes this week is on pancreatic cancer -
casenotes: the pancreas
Every year about 8000 people in the UK are diagnosed with pancreatic cancer and the five year survival rate remains depressingly low. Dr Mark Porter investigates.
Tue 15 Feb 2011 21:00 BBC Radio 4
Wed 16 Feb 2011 16:30 BBC Radio 4
Just as a post script, doctors in the UK are very well qualified and I respect their opinions and experience. However, after experiencing the standards of care in Germany-at least Heidelberg- I would not want to go anywhere else for a major medical decision. They do set the gold standard.
I have always been an admirer of the NHS, but let's face it the system is crumbling under the weight of lack of investment.
With hindsight, would we have opted for surgery? I don't know, I would have to ask my father. I don't think these questions are useful anyway because, as I said before, you can only make a decision based upon the facts you knew then.
PS my father had duodenal cancer, which is one of those really unknown quantities as far as cancers go as so few are diagnosed worldwide. Unfortunately, we have to wing it most of the time and most oncologists just apply what they know about other cancers to it and hope for the best.
My dad was operated on for 8.5 hours last monday by Dr Buchler and associates in Heidelberg, Germany.
I'm sorry I've not updated sooner I just haven't and I don't know why.
They removed the gall bladder, the spleen, most of the pancreas, some of the stomach and some of the large intestine.
I believe they had to cut a few arteries and/or veins to get rid of the 5.7cm tumour in the middle (body) of the pancreas that did cover said veins/arteries and they reconnected them afterwards. They took a cross section of the pancreas near the head and tested it for cancerous cells which proved negative so they left that in to aid with insulin and enzymes. On first thought you'd assume that the fact they left some in as a bad sign, as if they couldn't have removed it. But the fact they were able to leave some in I find to be a very very positive sign because I think Dr Buchler has the skills to remove the whole pancreas but felt in this case things were positive enough to leave some in.
They had to re-route some arteries and/or veins so they had to remove some of the stomach and large intestine because those parts would have been starved of blood and eventually died.
There were no obvious secondaries or signs of it having spread. liver function is good. We await the test results of the all important negative margins.
We've had 1 real complication to speak of which is when my dad moves one of his legs into a certain position he gets shooting pains from groin to toe down that leg. I don't really regard this as a complication so much as a side effect and worst case scenario they'll do a little minor keyhole surgery to free what we think is a trapped nerve.
My dads strong as a ox and puts my fat ass to shame, was awake and talking 2 hours after the operation even if he was high as a kite. He's doing really well lots of colour in his cheeks, all fluids coming out of him are the correct colour and they're looking to remove the 2 drains from the wound tommorow. My frankly epic mum keeps him in high spirits even though I think it drains her more than she'll ever admit. I'd move mountains for either of them.
If they can fix this leg issue it'd be great or I'll have to rent a chainsaw and take it off. I'll keep you updated
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?