Europeans if any?

Surgery is ruled out – th8e cancer is placed in such way in the gall ways/liver that surgery is not possible. (very close to big blood veins etc)

Krisi

Hi I’m another non US who dips in and out of here. I’ve had the standard UK response of the capcitebane arm of a trial for those diagnosed with a resectable tumour. It was made clear to me – although a bit of a shock at the time – that this was an attempt to prove an unknown outcome.

Our financially challenged ‘free at the point of delivery’ health service will only introduce or agree to new treatments that are based on clinical evidence. Also survival rates for most cancers in the UK are not particularly impressive. So there will be variations in treatment across Europe too.

Looking at Helen’s figure of 1500 diagnoses per year in the UK there are only a fraction of those active in discussion groups – a high proportion of those being the important group of carers.

As I am currently doing well I naturally feel my treatment route was the best possible and because of the small (but very important!) number of posters here there is no way of being sure of the experiences of the vast majority of those diagnosed.

Which is why your post is of special interest to me. My best wishes to you and I hope others contribute too.

Malcolm

Dear Frederica, Welcome to our wonderful family and Congratulations on Mom already being a CC survivor. Mom has shown you how strong she can be and now you must show her how strong you can be. Can you just imagine how upset she would be if she knew you didn’t feel good with your pregnancy because of being upset about her? We all have to pull on our inner strength and you also have a little life using your strength as well. Please take care of yourself. Don’t jump to conclusions until you see the Oncologist as when we hear things are small that is a good sign something can be done. I would suggst that you repost your first post under Introductions as I am afraid it will be lost under this longer thread. Now that you found us please keep us informed about Mom and know that we care. By the way we LOVE Babies!!! That is always good news.

Hi Jukka

Just for your information and to follow up Marian’s kind mention, AMMF is the UK’s only cholangiocarcinoma charity, working to raise awareness, provide information and to support research where we can. Our website is:

http://www.ammf.org.uk

and you can also visit our Facebook page.

Approximately 1,500 are diagnosed with cholangiocarcinoma each year here in the UK and, although there are a number of specialists who have experience with this disease, it can be very difficult for people to find them – something we are trying to change by setting up a list of these people, and centres of excellence for treatment, on AMMF’s website.

And it does seem that treatments offered in the UK do vary from those offered in the US and are often more conservative – for example, the Mayo Clinic seem to be achieving some excellent results using liver transplantation in suitable patients, whereas here in the UK this form of treatment is not considered at all for cc.

The discussion boards here on the Cholangiocarcinoma Foundation’s web site provide an excellent way to meet people from all over the world, including several from the UK, and I hope you will get some discussions going with them.

With kindest regards and positive thoughts

Helen

Sorry, Gerry. How could I possibly forget about you and the incredible, loyal, resource you have been.
Hugs
Marion

Jukka…our Kris lived in Sweden. You may peruse her postings under devoncat. Also, Helen heads the U.K. the AAMF Charity which solely is focused on Cholangiocarcinoma. And, we are always open in supporting others in the quest of establishing charities in their regions, globally.
All my best wishes,
Marion

Hi Jukka
I