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

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.

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

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!