In the UK and new to all of this
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I do sympathise with the waiting, waiting, waiting, Jemima. My sister was diagnosed at Kings College Hospital & I felt (& still do, sometimes) exactly the same as you’ve described. I can’t really add to the others’ comments – I do so agree with them all – so I’ll just offer you a very big welcome to this wonderful site.
I googled cc when my sister was 1st diagnosed. I’ve never done it since!! The information here is so much more rounded, practical & non-sensationalist.
My best wishes to you & your mum.
Julia
Hi Jemima
Everything everyone has said here is spot on (and this is certainly a wonderful site for information on everything to do with cholangiocarcinoma).
I would underline what has already been said though – you really should be getting more information than you have, but most “general” doctors in the UK will have seen very few cases of cc.
For something like this, you really need to be seen by someone with as much knowledge as possible. You are certainly entitled to a second opinion – ask for it, and ask by name for the person you want your mother to be referred to.
Professor Peter Lodge has been mentioned (Leeds), and someone else with an first class reputation in both the UK and Europe is Professor David Cunningham at the Royal Marsden (he works at both the Chelsea and Sutton sites of RMH).
With love and positive thoughts.
Helen
Hya both jemima and andie.
I urge you to keep on top of all of the people you are in contact with.
This forum is the place to be at all times and where you will gain the most important and best information ( ask for help on here) concerning
cholangio carcinoma. Get second and even third opinions if available.Then follow through with what information you gain from this forum.
My son Alan Smith, was also told in the same manner as your dad andie and I can sense your anger as we felt the same. Alan was treated at the QE BIRMINGHAM in 2006. We also required 2 attempts at stenting and a bag that was eventually closed up etc.
I can only add that if you need to contact me (I am birmingham based) you can through this site etc. You can view alans picture on here and all of my posts. I wish you both all my love take care love and light Alan’smom
Dear Andie, Kris and Gavin
Thank you for your replies. It is good to know that there are other people who understand what is/should be happening.
Mum has had the Macmillan nurse out to see her when she came back from hospital but not since then (6 weeks ago). She went back to the hospital about 2 weeks after being discharged and we saw her specialist again for the results of the MRI. She had blood taken at that time but no-one has given us any levels or taken any since (i.e. a month ago). She is not visibly jaundiced anymore but who knows since they haven’t tested her….
The specialist we have seen is a very nice chap and has done liver surgery in the past but just seems to come under the heading of General Surgery. Should she not be seeing an oncologist ?
She has been referred to Basingstoke for the decision on the surgery which I haven’t seen mentioned by anyone else. Does anyone know anything about the people there ?
The only contact we have is with the secretary of the specialist at our local hospital.
Surely someone should be telling her about other possible treatments so that at least she can get more informed incase the surgery is a no.
Her GP told her not to google CC so as far as I know she hasn’t so she is completely in the dark.
It just doesn’t seem right.
Thanks for ‘listening’
Jemima
Hi Jemima,
Welcome to the site although I am sorry that you had to find us. Where in the UK are you based? I agree with Kris that it is time for you to start making calls and to see what is actually going on and if your mum will be suitable for surgery or not. My dad was diagonsed in summer 2008 and it took his docs about 3 weeks to make the full diagnosis of inoperable CC. Then he started his PDT 1 week later.
If your mum does not have access to a clinical nurse specialist then I would take her to the GP and see if they can do anything about finding more info out. Does your mum have a Macmillan nurse? If so then they could also help. I know how frustrating all this waiting is when all you want to do is get some treatment for your mum.
Please keep coming back here as you will get a load of support and advice from us all. And feel free to ask any and all questions that you will have and someone here will be able to help.
My best wishes to you and your mum,
Gavin
Jemima,
It is time to start making calls and literally becoming a pest to the doctors…but always in a nice way. You catch more flies with honey than vinegar. They should have told you by now if it is operable. PErhaps the best thing to do is ask for copies of your moms scans and records and have then sent for a second opinion. Prof. Lodge in Leeds comes up regularly and I can recommend Prof Garden at Edinburgh Royal. He is a very kind man. I have a couple of friends who are doctors and they have all said that playing on professional pride is one way to get better treatment. No doctor wants another doctor peeking over their shoulder.Hope that helps.
Kris
Staging is hard to do until the patient is opened up and the extent of the disease is known. Both my initial cancer and reoccurance never showed up on any scans. CC is like that so the true extent of the disease can only be seen once open.
Biopsies can be tricky. Some believe that taking a needle biopsy can spread the cancer.
Hi Jemima, first of all welcome to this site, My Dad too has just been diagnosed with CC and like you said I have had to find out a lot of info about it on the internet, this site has been a blessing and given me much comfort when I have been feeling down.
What hospital is you Mom being treated at? My Dad went into RHH Dudley on 22 March with obstructive jaundice, no pain. After many CT scans, unsuccessful ERCP and PCT he was told he had inoperable CC and had months to live. A few days later he was transferred to QE Bham where he was told whilst they couldn’t operate they could help prolong his life with Chemo, he underwent a successful metal stent via PCT on 20 April, after a few blips with the stent he is now home. He has to have a EUS in a few weeks and then start Chemo as long as his Bilirubin level in 50 or below.
My Dads is extrahepatic and whilst small it is unoperable due to it’s position.They told us they couldn’t actual stage it until a biopsy was taken, my Dad will have this done when he has his EUS.
Has your Mom got a Clinical Nurse Specialist? My Dad has got a lady called Catherine Markham at the QE who we can ring anytime. She has been very helpful regarding Dads progress and treatment.
Is your Moms Bilirubin Level back to normal and is her Jaundice gone? Only from what i can make out they can’t do any treatment until this is sorted out.
I too feel useless and that things are not getting sorted out quick enough, i like to plan and are learning the hard way that my Dads condition is out of my hands and we are going to have to take each day a step at a time. Sometimes we seem to be going one step forward and two steps back.
Wishing you and your Mom all the best
Hello
I have been lurking around here since my Mum was diagnosed mid-Feb 2010. You all seem so strong and knowledgeable and was hoping you could give me some advice as to what to do next…
My Mum is 77 and presented with jaundice early Feb. After a CT scan they diagnosed CC mid-Feb. She went into hospital early March for stenting which failed the first attempt but they managed to get one in a few days later. She had an MRI scan after the stent went in and then had to wait two weeks for the results. Since then she has been waiting to have her case reviewed at another hospital to see if she is suitable for surgery.
The tumour is in the left bile duct inside the liver but seems to be small.So basically 2.5 months after it all started she seems to be no further forward apart from the stent. No-one has told us anything in detail about other treatment options so if they say no to surgery we will no doubt have to wait even more to see someone about chemo/PDT/radiation.
No-one has said what stage the tumour is or anything. They have not done a biopsy. We just seem to have no information.
Everything I know I have learnt on the internet.
Can you tell me whether all this waiting is normal and if not who should I be talking to. Her GP hasn’t been in touch since the initial diagnosis.
From what I have read this horrid disease can act very quickly and to me it seems like all we are doing is waiting.
Thanks for any help you can give as I feel so useless.
Jemima
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