Help for patients in the UK

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    Carol … How did you guess? I just had chemo Friday morning so yes I’m pumped with steroids and benadryl but am starting to slow down today. Up and Down and all around,were I stop I hope my feet hit ground. (not my head). Ha! I,m having a Big Mac Attack!
    Jeff G.
    P.S. Changed my mind KFC original.


    i take your point that 2 national centres and 2 spcecialists would not be able treat everyone , The centres could be used as a resource for other hospitals for information and advice. If people wanted to and were able to attend one of the centres then great , but if not ,specialist help and advice could be given to the treating Dr . At the very least all cancer units should know how to acess the information
    we live in London and Jon was treated by one of the best cancer hospitals in Europe and they had no usefull treatment options and were also not really interested in any of the research that we found on the Net
    Jon was operated on by Prof Lodge after us finding out about him and asking for a referral.The Dr Jon was under had not heard of the Prof and his work.
    I feel that national centres that are well known would help this process and speed up usefull treatment . It will be too late for Jon as he died in Dec06, but I really hope they help other people
    I Know that in the UK treatment options are set by NICE guidelines and specialist centres will also help to develop and set the latest treatment options hopefully based on worldwide research


    Hi Jeff, are you on steroids? JUST KIDDING. You gave a lot of good information. Hope you’re having a great day!



    Pauline… Additional Cancer Treatment Centers could easily be additions to other major hosptials throughout the United Kingdom as cost savings. It would not have to be cholangiocarcinoma specific centers but definitely be equpiped with the proper testing equipment for all cancers, staffed with well trained specialists, oncologist,surgeons, and nurses. I’m basically saying these centers need to be provided proper and updated current treatments available and NHS have all specialist educated enough to know when to refer and/or how to refer patients with cholangiocarcinoma for surgery and treatments to specialist. More specialist need to be educated specifically with this disease and stop thinkin in the ole brown shoe days/ lets get more modernized with with our approach and thinking as Professor Lodge is. One or two surgeons can’t provide proper care to all. Maybe have some surgeons do internships with Professor Lodge or other renowned surgeons to get up to speed. Knowledge and communications through the medical profeesion needs to step up and NHS or governing body needs to see this is done effective and quickly. They could start doing this tomorrow by way of electronic emailing / facsimiles/ typed and mailed directives highlightening the level of which NHS doctors are to respond to cholangiocarcinoma. Well I spoke my mind again. More equipment and more specialist with additions to some current major hospitals throughout the UK would be more effective and cost beneficial than cholangiocarnoma specific centers and allow expansion quicker throughout UK not just England. Interships with the specialist. There I ‘m done.
    Wish you a happy day!
    Jeff G.


    I’m glad you agree re the national centres. The experiences of cc patients to date is pretty poor here isn’t it and so dependent upon where you live . We live in London as well and almost travelled to the Mayo Clinic (despite the costs) because of the frustration of trying to find anything other than chemo here.
    A year later and we have managed to access different treatments and have built up, with a lot of hard work, a fair bit of information about where different things are done but it really was a struggle for many months – a struggle we could have well done without – and still no one seems to have a complete over view of this disease.
    I think this news that the Dept of Health is looking into the establishment of centres is a potential big step forward and we should try to keep the pressure on to ensure that it happens and quickly. I think it would be really good if all the UK patients on this site added their thoughts and experiences – there seem to be quite a lot of us and this seems to be the only place that we get to communicate,doesn’t it? Another advantage of centres, it occurs to me, is that patients and their families could meet each other and share experiences if they so wish. It can seem a very lonely disease,can’t it?


    I agree with you.National centres are vital .Guidelines and treatment options could be set by them and could be acessed by all hospitals . People then have the choice of travelling to the centres or getting treatment locally .
    We live in London and travelled to Leeds to have treatment for my husband under Prof Lodge. He was prepared to travel almost any where in the UK for positive treatment as our local hospital could offer no hopefull treatment.


    I notice that Stacie mentioned 2-4 centres which could potentially resolve the issue of a centre in Scotland. I think the centres are a good idea though, whatever the number, because the expertise, research, and protocols generated should benefit all cc patients.
    It would seem to me that those patients who live at some distance from a centre but want to access the expertise there could travel to the centre for an initial assessment to agree a plan for their treatment. They could then have that treatment at their local hospital and just return to the centre for key scan results, for example, and further discussion re next steps. My husband ,Anthony, certainly feels he would be prepared to do this in order to get the best diagnosis and treatment plan.
    I also think that those patients who don’t wish to travel, or are unable to, must still be able to be treated at their current hospital. Hopefully, the guidelines that would be developed by the centres would be used by all hospitals and would, therefore, improve the experience of all cc patients whether they attend one of the centres or not. What do you think?


    My only concern is from my experience living in Glasgow, is that people in England believe everyone in Britain lives in England and that everything needs to be centered in England. We have members of this board from Scotland and I am sure that people in Northern Ireland also have cc. I am concerned that Professor Lodge mentioned 2 centers, one in London and one in Leeds. What about others? The last thing people need to do when facing a terrible illness is have to travel 6 hours plus. Perhaps national guidelines would be a better first start so all doctors and patients will know what is happening. Having national centers are great if it means they are truly national, not just English so that everyone can benefit.

    Goodness I sound like a Scottish Nationalist! :)


    Pauline .. Excellent input! My wife was born and raise in England and I lived there almost nine years. You did’t miss abeat in reference to your post to Professor Lodges. NHS has been running behind times in the past but have really been making some great strides in the pass few years with cancer and as well as other diseases. Now if they can keep moving in the direction Professor Lodge is pushing for would be a major accomplishment.
    God Bless,
    Jeff G.


    Dear Stacie,
    I did reply to Prof.L and my husband Anthony and I are very keen to see big improvements in care for patients with cc in the UK. A few key points might be worth stressing:
    * patients are given different advice and treatment according to which area of the UK they live in e.g. some are told to have no treatments at all whereas others are advised to start chemo straight away. Some are monitored carefully with regular blood tests and scans, others are not.
    * it is very difficult to find out where to go for treatment, for example, we have recently discovered that there is an NHS trial at Christie’s and Hammersmith of gemcitabine/cisplatin but we didn’t know about this when my husband needed it.
    * many oncologists in the UK seem to be very anti radiation treatment and this means patients rarely get offered it even if they really want it. If you decide you want to try radiation because you have done your research, for example, on the work of the Mayo Clinic it is then extremely difficult to find a hospital willing to do it. They do exist but there is no information available about who does what and it may take you several months of stress to find it. We even heard of a young patient who travelled to Canada for radiation treatment because he couldn’t find it here. (Our experiences in searching for different treatments and finding them actually led us to want to try to help others in our situation and this is why I first started posting on this site).
    * as this is a rare cancer it feels as though patients and their families have to do a lot of the hard work themselves, both in terms of research and in finding treatments. When you do locate the treatment you want you can find yourself attending several different hospitals which is clearly not ideal as no one has a complete over view of the patient. What we feel we haven’t had is some one saying ” OK here is the plan – we’ll try chemo and then next we’ll try such and such ” The patient perspective in our experience is one of having to be very pro active and having to push for every thing at every stage.
    *Due to the rarity of the cancer and its poor outcomes for patients there is very limited research going on in the UK and therefore we seem to be very slow to be given access to new treatments compared, for example, to patients in the USA and other European countries.
    In conclusion it would seem that having specialist centres for cc would enable patients to
    1. Access a variety of relevant treatments more easily than is currently the case with a consultant who has a complete over view of their case.
    2. Attend one hospital with consultants who would have ever increasing expertise and experience with this cancer.
    3. Experience less stress and be able to concentrate more on getting better than on getting treatment .
    It would enable doctors to
    1. Establish a set of common procedures for patients from which datailed individual patient plans can be developed.
    2. Undertake some research into this cancer to further develop plans for patients.
    3. Link up with the other centres to pool experiences and results.
    4. Develop expertise in and an over view of what really works for patients with this cancer.

    I hope this information is useful and Anthony and I are really looking forward to hearing about the outcome of this.

    Thanks for taking this issue on board. I am very willing to be involved in whatever way I can in improving things for patients with this disease.
    Pauline Roberts


    Many of you read with interest the post from Prof. L. I have been corresponding with him for the past few days.

    We would like to ask for your assistance, especially those of you who are residing in the U.K.

    A proposal goes before the UK’s Department of Health next week, asking that 2-4 National Centers for Cholangiocarcinoma care be set up in the UK. This would mean streamlining many processes and having access to the best possible care available, correct equipment, facilities and trained personnel for Cholangio patients.

    It is important that the Ministers of Health understand the difficulty of the current patient journey. They also need to know that there would be public support and interest, particularly from families that have been touched by cholangiocarcinoma.

    If this would be of interest to you and you can share some of the difficulties you have encountered getting good care, please send me a detailed e-mail which I will then forward to those who will be taking this proposal to UK government officials.

    Any information you would like to share can be sent to

    Thanks so much!

Viewing 11 posts - 16 through 26 (of 26 total)
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