'I thought I had indigestion - it turned out to be liver cancer'

When Louise Wallace began suffering stomach pains in 2020, she was not concerned at first.

The 34-year-old from Lanarkshire thought it was a bad case of indigestion, and even when the pain continued for a few weeks she believed it was a stomach bug.

However her doctor suggested getting blood tests, and within 24 hours of them being taken Louise was being asked to go back for further scans. It turned out she had cholangiocarcinoma – an aggressive type of primary liver cancer.

Now cancer free, Louise is calling for greater awareness of the disease, which has symptoms that can easily be dismissed as minor ailments.

She will be at Holyrood later to meet MSPs and mark World Cholangiocarcinoma Day.

Louise, who stays in the village of Tannochside in North Lanarkshire, told BBC Scotland News the speed at which she discovered she had the cancer was horrifying.

"It was terrifying how quickly it was all happening. Early on I did what you're not supposed to, and looked up the symptoms online," she said.

"You're reading survival rates and they're very poor. It was during Covid when this happened, so I was in hospital with no visitors too.

"I'm just lucky that it's looking good now and hasn't come back since surgery."

Figures from the Scottish Cancer Registry indicate a 62% increase in cases of cholangiocarcinoma in Scotland over a 22 year period, from 2001 until 2023.

There is no known cause behind the rise in case numbers being recorded in Scotland.

Louise was unaware of the cancer until learning she had it.

Her diagnosis only came after her partner Fraser pestered her to check out recurring stomach problems.

"It started as really bad indigestion but I wasn't too concerned," she recalled.

"I have had ulcerative colitis since I was a teenager, and thought maybe it was flaring up again.

"It lasted for three weeks though, and was starting to make me feel sick."

The doctor first thought that it might be a bad stomach bug and asked her to come in and get some blood tests.

Louise added: "The very next day they phoned to see my liver function tests were quite high and they wanted to do a CT scan.

"I was starting to feel tired and I had itchy skin a lot by this time.

"The scans showed a blockage with my bile duct and at that point they told me it was suspected cholangiocarcinoma."

There is no NHS screening programme currently in place to help detect cholangiocarcinoma, but initial implementation of genomic testing is being introduced across the country this month.

The disease's rarity means that data on morality rates is harder to come by than more common types of cancer, but the charity AMMF believes the figures are "dismally low".

Louise's surgery was a success and the tumour was removed.

She feels it was only down to her doctor's insistence she gets her blood tested that the disease was spotted quickly, as well as the fact she has two existing medical conditions - ulcerative colitis and the liver condition primary sclerosing cholangitis (PSC).

"It's something that can start off so mild," she says.

"You think you can brush it off and you're just a little sick, but if people are more aware of the symptoms then they can be diagnosed quicker and maybe save lives.

"Having underlying health problems maybe helped me, as I would be getting checked anyway.

"If I'd maybe gone in with no history of problems then they might have just thought it was just a stomach bug and given me antibiotics."

Paul Howard, head of policy and research for cholangiocarcinoma charity AMMF, believes it is important the cancer is recognised as a growing health concern.

He said: "It's a primary liver cancer but it doesn't typically present itself in people with chronic liver disease, so there is not a defined at risk population.

"We are seeing an increasing amount of young people being diagnosed with this, and awareness is very important - we need to be able to diagnose this cancer earlier.

"It presents very few symptoms in the early stages and those can be vague."

For Louise, she has been going back to her normal life, working in an admin job and carrying on with hobbies like crochet.

However, she still worries that the cholangiocarcinoma might return.

"It can be quite isolating," she reflects.

"I'd go to support groups for cancer survivors and it was quite rare to meet anyone who would had the same symptoms and even now, if I start itching, I get anxiety in the back of my head that it's coming back.

"But it has been so long now and it hadn't returned.

"I know I'm incredibly lucky that my doctor wanted me to be tested. It shows that if you catch it early enough then there is hope."