Topic: National centers for cholangiocarcinoma surgery

I run a busy liver surgery service in Leeds in the UK.  Many patients with cholangiocarcinoma have trouble finding me and many have been turned down by other units before they do find me as UK regulations prevent surgeons from advertising what they do.  As a result, I have put a proposal to the Department of Health (UK govermnet body that controls healthcare in the National Health Service) for national cholangiocarcionoma centers to be established - probably 2, but maybe 3 or 4, for the UK.  The Department of Health would like to hear from cholangiocarcinoma patients and their families to hear if they they think this is a good idea or not.  It would mean patients travelling further for care in some cases, but I think the standard of care provided would be higher than the current situation.  My proposal is for our service in Leeds to cover the North of England and a center in London to cover the South.  I would be grateful for your views.

Re: National centers for cholangiocarcinoma surgery

Prof L

I think this would be a wonderful idea.  If such an institution existed I know my husband would be there as fast as he could book a plane ticket.  It is extremely hard to find surgeons willing to take the chance of operating on cholangio tumers even if the patients are willing and realize the high mortality risks.  As he puts it...he would rather die on the table trying to remove the cancer. 

Karen

Wishing all God's blessings!

Re: National centers for cholangiocarcinoma surgery

Where does Scotland and Northern Ireland fit in with this plan? And how does this differ from liver units (such as that at Edinburgh Royal)?

Thanks!

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: National centers for cholangiocarcinoma surgery

Prof L

I think anything that raises the profile of cholangiocarcinoma within the NHS must be a good idea.  It also makes sense to assemble expertise in accessible national centres.  I do, however, share Kris's concern about the position of patients in Scotland and Northern Ireland.  If the optimum number of centres is only 2 then to double the required number will make it extremely difficult to properly staff and fund the centres.

My own case was referred to you by Mr Powell at Edinburgh Royal, but unfortunately, you did not believe you could help me.  I do not know if that referral would have been possible had I not been aware of you and your work.  So perhaps more information could be made available within the various cancer and liver centres in the UK.

Kind regards

Ron Smith

Re: National centers for cholangiocarcinoma surgery

Dear Professor L,
                        I have written several posts on this site about the problems of finding treatments for cholangiocarcinoma in the UK and my husband, Anthony, and I are very pleased to read your message. Since he was diagnosed a year ago we have spent many hours on the internet researching the disease and then have spent many more hours trying to find out where the different treatments are available in the UK. My husband was keen to try treatments that aimed at reducing the tumour with a view to surgery if this became possible. We read a lot about the pioneering work of the Mayo Clinic and other centres in the States and decided to try to get radiation treatment when 6 months of gemcitabine/cisplatin failed to reduce the tumour.
                 Our experience was that it was very difficult to find out who would do this in the UK. We nearly travelled to the mayo clinic but after several months of telephone calls and e mails we found a doctor at Barts who was prepared to do it. Our experience was that it is a complete mine field trying to find out who does what and where and even the consultants don't seem to know. All this really added great stress to an already very stressful situation. It did't seem necessary that we had to spend so much energy simply trying to find treatments that already exist and are offered on the NHS. I was desperate for some kind of list of available treatments for this cancer but soon realised that it doesn't exist.
I came onto this site to try to help other UK patients by saving them time if they were trying to search for some of these treatments. I would certainly be very keen to communicate with anyone in the Department of Health with a view to improving this situation.
Anthony and I think that centres for patients with this disease providing all the various treatments( chemo/PDT/external and internal radiation/embolisation/surgery) would be useful but probably even more important to all patients in whatever area of the UK would be clear information on where the different treatments are available so that everyone gets the same chance to access them if they want to and if they are suitable for them. I look forward to further communication with you on this issue.
      With thanks,
             Pauline Roberts

Re: National centers for cholangiocarcinoma surgery

Prof L

You may remember my husband Jon , you operated in Nov 06 with unfortunately a bad outcome, but we were so pleased to find you after a lot of research by myself.

I think national centres would be a excellent idea , as you may recall we came up to Leeds from London after a referral from our local cancer hospital This was a world renowned cancer hospital , but they were unaware of you and your work in Leeds until we requested a referral ,and there was a very limited scope of treatment they could offer and all of it without any hope

I think that the distance involved was a minor issue for us , we went up to Leeds 3 times and had the outcome been good we would have travelled up for reviews post op as well.However saying that we were lucky to have some financial help from both our families to enable us to travel and stay in hotels .

Two centres 1 in the south of the country and 2 in the north may go a way to resolving some of this.I

I think that for a specialist service ,generally people would be prepared to travel a bit further

Another issue may be quicker acess to tests , Jon had abnormal blood liver tests, then had to wait 6 months for an ultra sound , then 2 weeks for a CT scan which then showed such a huge tumour that the person doing the scan was unable to hide his horror at what he could see on the screen ,not a pleasant experience for Jon.

Thank you for trying to set up these centres and  and again thank you for your care of jon , mainly for giving him a glimmer of hope

Will these messages be forwarded to the DOH ? or do they need to be contacted directly?


Alison Moore

Re: National centers for cholangiocarcinoma surgery

Hya Prof Lodge

I fully agree that the U.K. needs urgently a cholangio centre, in my opinion I would have travelled anywhere for help with my son Alan.
One of the things that we now realise is that most people have never heard of cholangio carcinoma. If I had known of you and your work at the time of Alans illness I would have been camping out on the doorstep at your centre.
I knew Alan had a gallbladder problem and we informed our doctor of this at the time.
My son visited his doctor several times and they had not got a clue. He visited the hospital in Solihull and was told he was constipated, and to this day I am still in contact as they cannot even get the name correct.
He visited our Selly Oak hospital in a dyspepsia clinic and nothing was done and he was already dying.
I finally took him as an emergency patient into Selly Oak hospital myself and he was transferred to THE QUEEN ELIZABETH HOSPITAL AND HE DIED 8 WEEKS LATER. It was barbaric, this was his words. He asked about photodynamic treatment but he was told it would not help.
If ever you are in need of his records and X-rays for anything to help in any way, studies, seminars etc. I would gladly provide all of them for viewing or for copies to be accessed for future references.
I also feel one of the main criteria is emergency access to all X-rays, scans etc.
I would really be pleased to help your campaigne in any way.

Alan smith's mom Teresa. B.sc (Hons). LCPH. MH.

U.K.Member

Re: National centers for cholangiocarcinoma surgery

Teresa,
          My husband, Anthony and I were very saddened by your son's story. It brings home in the starkest form what can happen when there is a terrible, rare disease that the NHS hasn't got to grips with in any kind of planned, coordinated way. The plan for these centres seems to be the first signs of something strategic happening, doesn't it?
          No one should have to go through what you and your son experienced and I for one will be with you all the way in trying to make sure that this kind of patient experience becomes a thing of the past. After all isn't the NHS supposed to be there for us all in our time of need? I realise that this is all to late for you but really respect you for carrying on with your involvement.
         I hope we hear some news soon about the outcome of the meeting that was apparently taking place this week.
         Very best wishes,
                  Pauline Roberts

Re: National centers for cholangiocarcinoma surgery

Hya Pauline
Yes, I agree it is really heartening to see something concrete surfacing for the future.

We had to deal with so much ignorance whilst alan was ill. As I have pointed out, we are dealing with people within the NHS who say they know of this but when the letters come back to us it is apparent they have no knowledge of what they are writing about.
At my last visit to one of these hospitals I felt so pleased with the progress that had been made, and I was feeling so confident  steps were going to be put into practise to help patients in alans situation.

I am a qualified councellor and homoeopath and have realised my training is helping me to come to terms very slowly with the situation and one day I will be able to write alans story.
During his last week he said "mom when I am gone tell everyone my story, I am really happy and loving my life."
I also agree with many people that  I am so angry. Yes, I am and I feel that I am entitled to be this way until it subsides. It will one day I know for sure.
love and light to everyone alan's mom

U.K.Member

Re: National centers for cholangiocarcinoma surgery

Prof L

I run a small UK charity, AMMF, which was set up after my husband, Alan, died from cholangiocarcinoma at the end of 2000.  (Please look at the web site to see what we do - www.ammf.org.uk)

The aim of AMMF is to raise money to support research teams working in the areas of gastrointestinal cancers, and especially cholangiocarcinoma.  We are presently giving grants (albeit small) to Professor Simon Taylor-Robinson and his group at Imperial College who are researching the causes of cc, to Professor David Adams at Birmingham University researching dendritic cell therapy in primary liver cancer, and to Professor John Primrose