pauline
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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?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 RobertsDear 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 RobertsDear Sue, Jane, Ron and other UK members,
It’s really good to make contact with you. This can be a very lonely disease,can’t it? My husband, Anthony, was diagnosed with intra hepatic cc a year ago and is a patient at King’s College, London.
We found king’s to be very supportive as have the other hospitals where we have sought treatment eg Barts(radiotherapy – external beam) and Hammersmith(a second opinion). King’s have been brilliant in treating my husband’s underlying PSC with stents, regular scans, hospitalisation for infections, regular blood tests and out patients appointments. When they discovered the cancer while replacing his stents, they suggested chemo therapy straight away and have listened and tried to meet our requests for treatments ever since.It does seem from reading your messages that the approach to this disease varies according to the part of the UK you are in. It might be worth us keeping in touch so that we can compare notes. We are very willing to share our experiences if you are interested.
With very best wishes
Pauline, London UKThank you Jeff and Wayne for your responses. We are going to try for the sir-spheres as it sounds like a really good option for cc patients. We first heard about it on this site and about the work of Dr Kennedy but weren’t sure that we could get it here in the UK. I was even trying to persuade my husband, Anthony, to go over to the States but he didn’t feel like such a long journey. We now have our oncologist looking into the possibility of providing it for hime here, depending on the lung situation.They haven’t done it before for cc but have for other liver tumours. Fingers crossed! I will let you know when we get the decision. Thanks again. Pauline
My husband and I are really interested in finding out whether you can have sir-spheres if you have already had external beam radiation to the liver and also whether lung metastases preclude treatment. Does any one have any ideas on this?
We would be very grateful for any advice on this!
PaulineDear Becky,
My husband, Anthony, was diagnosed with intrahepatic cholangiocarcinoma in April last year. We live in London UK and, athough we are at an excellent hospital for liver diseases ie King’s College, it isn’t always easy here to find the latest treatments that are available in the USA. However, having heard about your experiences of sirspheres, we started to look for it here but, just when our hospital is starting to offer it for this cancer, we find that Anthony may have two lung metastases. The doctors are currently reviewing his case to see if it might still be possible but I wondered, in the mean time, whether you, or any one else on this site, have heard of any one having sirspheres despite having lung mets. I would be very grateful for any advice on this.
Thank you
Pauline
