There’s a disease which claims as many lives as cervical cancer but most people have never heard of it. Catherine Scott reports on a campaign raising awareness of ‘CC’.
In the UK alone, more than 1,500 people are diagnosed with cholangiocarcinoma each year. It is responsible for more deaths per annum than cervical cancer and yet few people have ever heard of it.
And what is more worrying it is of the few cancers which is seeing an alarming increase in frequency.
Cholangiocarcinoma, “CC” for short, is a cancer which occurs within the bile ducts of the liver. It can be very difficult to detect and is, therefore, often diagnosed too late for surgery; currently the only curative treatment available. People below the age of 40 are rarely affected, and most people are diagnosed in their 60s.
Cholangiocarcinoma specialist, Dr Shahid A Khan, clinical senior lecturer and consultant physician at Imperial College London, explains.
“Despite treatment advances in many other types of cancer, with CC only five per cent of patients are likely to survive beyond a year.
“Why the cancer arises, how it can be better diagnosed and new treatments are key areas which urgently require further research.”
Now a major campaign has been launched by the Alan Morement Memorial Fund (AMMF) to raise awareness of the condition.
For the month of February, AMMF, the UK’s only cholangiocarcinoma charity, is asking people to spread the word about CC to friends and family.
AMMF is also launching the CChallenge for 2012. The CChallenge is simple. AMMF is asking people to raise money by doing something beginning with C. There are lots of ideas for sponsored challenges on the AMMF website.
It could be climbing the Three Peaks, cycling in the Lake District, or you might prefer something a little less strenuous, like cake baking, or the chef challenge, where you invite your friends to dinner and they make a donation to AMMF.
AMMF is funding the first research fellowship into the disease at Imperial College, London. The research will further work into the causes and diagnosis of CC.
Malcolm Robinson was diagnosed with CC in 2009 aged 58 and feared he may not survive.
“I started to feel unwell and thought it might be something to do with my age.
“But then people at work started to say I didn’t look well and then I turned yellow.”
After a blood test Malcolm was diagnosed with cholangiocarcinoma.
“You get the diagnosis and then you go on the Internet and read that its incurable and that out of 1,500 people diagnosed a year, only 75 will survive the first year.
“It makes your horizon come crashing down. You start to think ‘will I ever see Ilkley Moor again?’”
Malcolm under went a major five-hour operation at St James’s Hospital in Leeds. He was also accepted on to a clinical trial which was researching the affect of chemotherapy on CC which in the past was thought to be ineffective.
“It was a gruelling six months but now two years down the line I am due for a scan.”
Malcolm is back working two days a week with people with special needs and is also back doing the thing he loves, walking in his beloved Yorkshire countryside.
“After I was diagnosed with CC I came across AMMF. It was such a help to talk to other people who knew what I was going through. Macmillan and other support groups do a great job but when you have CC you want to talk to people with the same condition not people who have breast or prostate cancer.
“They call it the orphan cancer because no-one seems to have heard of it.”
So when Malcolm was well enough he decided to do something to raise awareness of CC and the charity which helped him.
“One of the things I love doing most is climbing Penyghent and then having fish and chips in Skipton on the way home, something I thought I may never do again after my diagnosis.”
Now Malcolm is planning to walk the Wolds Way, inspired by David Hockney who grew up in the same part of Yorkshire.
“I want to make AMMF one of the tall trees in cancer support,” says Malcolm.
“They are funding research as well as helping people live with cancer.”
Alan Morement Memorial Fund
After Alan Morement died from cholangiocarcinoma at the end of the year 2000 AMMF (The Alan Morement Memorial Fund) was set up and registered as a charity.
It’s aim is to raise funds for research into the causes, treatments and cures for cancers of the gastrointestinal tract, and especially cholangiocarcinoma.
AMMF is the only registered charity in the UK working to raise funds for research into cholangiocarcinoma, a liver cancer occurring within the bile ducts.
For further details visit www.ammf.org.uk