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(6 replies, posted in General Discussion)

Dear Borlandn
I am one of the Uk members, and I have to say a very infrequent poster, although I still read posts regularly.  I am nearly four years post resection for a klatskin tumour and counting myself so lucky!

I think you should consider a second opinion, and ideally this should be at one of the centres in the UK that specialise in CC - visit the AMMF website where Helen Morement has collected some really great information on CC, including the specialist hospitals.

http://www.ammf.org.uk/cholangiocarcino … t-centres/

Read everything you can, ask every question of everyone - knowledge is power with CC!

Best of luck

Helen

Just had to let you all know that I too have had a clean ct scan - 39 months post resection for me smile

It is perhaps interesting to note that I am officially "discharged" from the hospital now - they have no plans to give me any more follow-up, a not uncommon view in the UK where there is no follow-up protocol and no insurance companies paying for the scans.  So now I have to decide if that is the way I want to go, or whether I will fight with my GP to get more scans in the future.

Helen x

Hi Everyone

I am very good at lurking around this wonderful supportive forum, and very bad at giving anything back.  So today, I am trying to make amends for that.

I am just celebrating three years since a good doctor here in the uk took his knife to my CC and so far, everything is great! smile

As a reminder, I did not have adjuvant chemo - not really the done thing here and didn't qualify for BILCAP.

I might start counting my success in months now, rather than days or weeks!

Thank you to everyone who posts - and hallo to all the other lurkers like me.

Helen x

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(4 replies, posted in Introductions!)

Hi Neil - welcome to our family.  Great to read your blog about your whipple op - it is both entertaining and a good reference for anyone else needing the same.  I had a resection for perhilar cc in November 2010 in Plymouth - as Gavin says there are quite a few UK members on this site! 

Could I also recommend AMMF as a great resource in the UK - good factual information and an amazing charity providing funding for very vital research into cc.  smile

Their website is Www.ammf.org.uk

Hope things continue to go well for you.

Helen

Just wanted to share my news with you all.  I got the result of my latest CT scan yesterday, and it was all clear - " no evidence of recurrent disease" to use their words.  It is now 27 months since my resection and I just feel so lucky....! smile

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(18 replies, posted in Introductions!)

Hi Jim
Just a quick post to say hallo.  I too am in the UK (Devon) and was diagnosed with CC in October 2010.  I was lucky enough to be eligible for resection, which was done in my regional specialist centre in Plymouth. 

I really cannot add anything to what Helen Morement has said about treatment for CC in the UK - I think it can be frustrating at times, and you really do have to fight your own battles sometimes ( or have someone great to fight them for you).  AMMF is a wonderful source of information and inspiration for me and many others in our CC family.

I can really associate with your list - it reads much like the one I have carried in my head for the last 2.5 years.  Keep working at it.....

Good luck

Helen

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(14 replies, posted in Introductions!)

Hallo Everyone!

After more than two years "lurking" around this forum, I have finally decided it is time to post so here goes.  I am 53, live with my husband in Devon, and have grown up twin daughters.  I was diagnosed with cc in October 2010 - not a great number of symptoms but just enough to know that everything was not as it should be.  Abnormal liver function led my GP to request an MRCP, which gave us the diagnosis you are all so familiar with.  I know that I was actually quite fortunate to get a quick diagnosis, but I still recall  those early days as pretty difficult.  Our healthcare system is a bit different here in the UK, and I found myself referred to a hospital with an upper GI cancer specialist team in Plymouth.  After more scans, they told me that they thought I was a candidate for resection, and of course by this time I realised that they were magic words to a cc patient. 

Surgery took place on 10th November 2010 - nearly 9 hours, during which time they removed  the left and caudate lobes of my liver, bile duct and gallbladder.  A new bile duct was fashioned from a piece of small bowel.  I had a pretty good post-op recovery, although my wound took many weeks to finally heal.  As you might know by now, post surgery chemo is not standard in the UK.  I was considered for the BILCAP trial but they decided that the risk of blood clots for me was greater than any potential benefits.

I went back to work part time at first, and then full time after a few months.  The first year after surgery was very challenging mentally - it seemed I was waiting for the cc to come back.  But I have learned how to live with that now, and I have just celebrated two years since the surgery.  I am only having annual CT scans now - next one is due in February. 

My cc journey has been, and continues to be, one full of people who have never heard of this horrible disease, so I am committed to raising awareness and to helping raise funds for research into cc.  Who knows what's around the corner for any of us?

Thanks to everyone who contributes to this forum.  It has been a wonderful source of support and information for me over the last two years, and I hope it will continue to be so!

Helen