HAVE you ever heard of cholangiocarcinoma? Thought not.

It won't ring a bell with most people, even though it claims as many lives in Britain as cervical cancer.

Cholangiocarcinoma – or CC for short – is a cancer which occurs within the bile ducts of the liver.

It can be very difficult to detect and is often diagnosed too late for surgery, which is currently the only treatment available.

Like nearly everybody else, Helen Tanner of Barnstaple, had never heard of the disease either when she was diagnosed with it in 2010.

Initially, she didn't feel particularly ill; the only indication that something might be awry were a "couple of strange symptoms which didn't feel quite right."

Helen, 52, a practice manager for two doctors' surgeries in Ilfracombe, said: "Probably because I had the benefit of working in the health care environment for many years, it kind of flagged something up."

Her doctor wasn't especially concerned but sent her for a routine ultrasound scan and blood tests.

In the end she never had the ultrasound scan because her blood tests came back abnormal and her doctor wanted to repeat them.

There were indications that something was wrong with Helen's liver function and she was given an urgent appointment for an MRI scan at North Devon District Hospital.

When she was subsequently called back for an urgent appointment with her GP, Helen thought it wasn't going to be good news.

She then learned that the scan had indicated the presence of cholangiocarcinoma.

Helen said: "It is a rare cancer although incidences are increasing. A lot of people don't get diagnosed until right near the end. Some probably die not having been diagnosed."

Surgery to remove the cancer is the only potentially curative treatment and a decision about whether an operation can be done depends on the results of diagnostic tests.

Helen was given a CT scan and the results were sent to doctors at Derriford Hospital, Plymouth, who believed they could offer surgery.

Although the outcome was far from certain, she tried to remain positive because so few sufferers – only 10 to 15 per cent – get the chance of surgery.

She knew there was a risk of dying on the operating table or immediately after surgery but took the view that without it, she had no chance of survival.

The operation in November 2010 lasted eight and a half hours and surgeons removed half of Helen's liver, gall bladder and bile ducts.

They also fashioned a new bile duct out of a piece of her small bowel; the new duct is now connected from her liver straight to the small bowel.

The surgery has left a scar measuring 14 inches.

Helen was in hospital in Plymouth for nine days, during which her family – husband Colin, twin daughters Nicola and Clare, both 26, and Clare's boyfriend – lived in a chalet nearby and were on hand to provide support.

When back home, district nurses and then her surgery's practice nurses changed her dressings over a two-month period.

After four months of convalescing at home, Helen returned to work part-time for three months and resumed her full duties at the beginning of June 2011.

She said: "It took a year probably to feel absolutely back to normal. I did not think it would take as long, but it did.

"But I did learn early on that I had to listen to what my body told me and go with it.

"All my family, friends and work colleagues were terribly supportive, watching out for me. You cannot say you are cured as only five per cent of people are alive a year after their diagnosis.

"I know I am very lucky to be one of those five per cent."