goonerjack
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Hi DaughterW
I too had inoperable/terminal Bile Duct Cancer diagnosed with a relatively short lifespan prognosis (3 months) However here I am almost 2 years later.
My approach is to be as positive as possible, keep busy and avoid any negatives. I have a website/blog that you may find of value – http://www.jacktiley.com –
Best wishes from GoonerJack
Hi Robert. Good to get more UK discussion. I’m in Manchester although originally from NW London – I still am a passionate Arsenal FC supporter which goes down well (!!) living in Manchester for past 25 years. Best wishes from GoonerJack.
Whilst not having any direct NI connection, I think a short 30 minute plane trip to Manchester gets you to about 15 minutes from “The Christie” which is probably one of the top cancer centres in the world. I am very impressed with their knowledge of, and research on Cholangiocarcinoma. Prof Valle and Dr Hubner are the lead consultants and a visit to one of them is strongly recommended – best wishes from GoonerJack in Manchester.
Hi Leeds, UK – this is GoonerJack in Manchester, UK.
Glad you are considering Christie; I’ve been seen by their consultants and strongly recommend Christie as it’s probably the leading UK cancer hospital.
At 74 years young, I had a 6 month prognosis over a year ago! My approach has been to ignore the time-scales, keep busy (I’ve got a large close family, two Internet based businesses, Gym 3-4 times a week, Pilities, running up to 5k a couple of times a week). Don’t accept any negatives and keep positive.
More on my earlier posts. Great to hear from a fellow Brit.
Best wishes
Hi, it’s Gooner Jack here.
From being diagnosed just over a year ago and given about 4-6 months I am feeling as fit as any time in the past 10 years – a stent, stopping chemo after two sessions as I did not like the after-effects, September showed a build up of debris, so a replacement stent plus regular bloods (liver function) is all the external stuff – my consultant is really delighted with the biochemistry numbers now (as good as two years ago).
Tumour is close to liver so not operable, however Christies in Manchester is one of only two UK cancer centres that is getting proton beam equipment funded by NHS. It will be operational in 2018 and my consultant is ok to refer me for this highly specialised procedure if initial review shows a reasonable chance of success. A great target for me to maintain current progress.
Just had the best Festive break ever; all our 3 children, 7 grandchildren, and a new grand-daughter all at my son’s large house. Over 4 hours of opening presents, great food and not one single negative during the 3 days. On top of that my life-long passion for Arsenal Football Club sees them topping the Premiership table!!
Still too busy with family, work and occasional holidays with my wife to let any negatives enter my life. It’s a bit silly to say that CC has “improved” my life, but as an active 74 year old I sometimes think that without the initial prognosis maybe . . .
Best wishes to all
Gooner Jack
Hi all
Sunny mid-day in Manchester and mild for time of year.
Have been researching SIRT and feel it’s worth exploring if it is right for me.
Have been in touchk with my excellent GI consultant, and she wants to review with me in clinic this Thursday.
What I’m reaching out to you guys is to get some idea of questions I need to put to her.
Many thanks
GoonerJac
Hi Gavin
Same here; although before blockage and stent work I felt very well, now feel great and ready to resume running. Regarding stats, I guess Christies probably have about a half- many just letting life pass them by!! Not me I’m too busy to concern myself about anything negative.
Sunday’s draw was a bit of a let-down, but Aston Villa drawing with Man City means Arsenal are still joint top.
Take care and best wishes
GoonerJack
Hi – Marion asked a couple of questions:
As I’m being looked after by 2 of the top UK hospitals (GI at Salford Royal and Cancer at Christies) I don’t feel in need of a second opinion; I have also got views on this by my son-in-law’s brother who is Medical Direotor at Gt Ormand Street hospital in London and his wife who is a consultant and lectures at London University. Both feel I can’t beat the quality of specialists I have around me.
Notes from my surgeon may help
“Urgent 2 week referral, definite cancer. WHO performance status 0. Jaundice. Clinically Important comments: ERCP for obstructing lesion in CBD. Brushings confirm malignancy (cholangiocarcioma). – Plastic stents in situ. Exchange for metal stent.
Cannulation via the the major papilla was successful, and to the pancreatic duct was not attempted.
BILIARY. Stricture: malignant length 3cm and with upstream dilation within.
Therapeutic procedures – plastic stents removal. Stent insertion . 10mm diam 8cm length Boston RX uncovered metal biliary stent deployed in an acceptable position with the lower end of the stent beyond the ampulla. Good biliary drainage obtained and small calculi also expelled. “Although I think I understand what has been undertaken, my education of my condition is growing fast (My own degrees were in Engineering and Business Management, my son – Biochemistry at Oxford – helps)
Observations and comments most welcome – GoonerJack
Hi, just a couple of questions.
As a relatively new Cholangiocarcinoma “patient” I wonder how rare this condition is as many medical professionals in the UK don’t seem to have any experience or knowledge of it. Approximate numbers for US and UK would be great to know.
I am now posting more and maybe should have or go into another discussion thread – not Introduction as now?
Take care, GoonerJack – Big soccer match for Gooners (Arsenal FC) this afternoon at 4 pm UK time, wish us well.
Thanks for the great welcome, glad I joined group – you all sound to be very switched on. I recently had high temperature and jaundice – so up to my excellent GI consultants at Salford Royal Hospital. After CT and plenty of other tests (very high bilirubin) they arranged for GI surgeon who is specialist in this area to clean out bile duct stent of debris and put an extension on. Blood test after showed bilirubin back to normal and I soon felt great again. This is only “setback” I’ve had for about 8 months, anyone know what the debris is and how caused. Incidentally, the tumour is close to Liver and controlled. Bloods monitored every 2-3 weeks to check bilirubin etc; Consultants at Christies Cancer Hospital (one of top UK cancer centres) are more concerned about Liver function and seem to accept that tumour is controlled. Take care – GoonerJack
