Ipswich nurse working to raise awareness of rare liver cancer after losing her mum to the disease
"I promised my mum was that we'd raise awareness of this cancer so that other families aren't in the position that we're in"
An Ipswich nurse who lost her mum to liver cancer is working to raise awareness of the disease - which she says is often misdiagnosed.
Abi Jenkins' mum Sue, who lived in Felixstowe with her husband Paul, died in August aged just 60 - months after being diagnosed with Cholangiocarcinoma, a rare type of liver cancer.
She had visited her GP at the start of the year after experiencing a pain in her chest, which became so bad she ended up in Ipswich A&E twice during April.
Whilst in A&E, Sue had a liver blood test, which came back showing abnormal results, and she was directed back to her GP. A nurse at her GP surgery organised a CT scan of her lungs and in early June the scan results came back showing a tumour on her liver.
Sue was then referred to the gastroenterology team at Ipswich Hospital, as Abi explained:
“They told mum that they weren’t sure what type of cancer it was, and explained that as tumours that start in the liver are so rare, it was likely to have spread from somewhere else.
"They booked her in for a full-body CT scan and then did a biopsy. Finally, in mid-July, the biopsy results came back and she was diagnosed with liver cancer. But we were told it was likely to be hepatocellular carcinoma – the type of liver cancer that’s more well-known.”
By the time Sue was diagnosed with cholangiocarcinoma by the oncology team at Ipswich Hospital, Abi says her health had deteriorated significantly: “When she was admitted into hospital for chemo, a doctor took my dad aside and told him he should basically start planning mum’s funeral and to get a hospital bed downstairs. That was a huge shock."
She died just a few weeks later.
Abi tells us she was inspired to raise awareness of the disease, after making a promise to her mum: "We are heartbroken and devastated everyday and we miss her beyond words, but one of the things I promised my mum was that we'd raise awareness of this cancer so that other families aren't in the position that we're in....
"There will never be any consolation to losing mum as quickly or as tragically as we did, but if we can do something so someone else doesn't experience the pain that we've experienced, then that does feel like something... I want to make some good of this...
"If my mum's GP had been aware of cholangiocarcinoma and some of it's symptoms, they might have been able to seek out treatment at that point."
What is Cholangiocarcinoma?
AMMF - the Cholangiocarcinoma Charity - says cholangiocarcinoma (pronounced kol-an-gee-oh-car-sin-oh-ma), which is also known as bile duct cancer, is the second most common primary liver cancer worldwide.
It is difficult to diagnose accurately and early, so often, by the time of diagnosis it can be too advanced for surgery – which is currently the only potential cure.
Symptoms
Cholangiocarcinoma causes very few symptoms in its early stages, and most are quite vague.
These can include:
- Discomfort in the abdomen
- Loss of appetite
- Nausea
- Tiredness
- Feeling generally unwell
- High temperatures and shivering
- Weight loss
More specific symptoms of cholangiocarcinoma tend to show when the disease is more advanced.
These can include:
- Jaundice – which happens when a tumour blocks the flow of bile from the liver to the intestine, causing bile to flow back into the blood and body tissues. When that happens:
- the whites of the eyes and the skin becomes yellow, although this may be less obvious in people with darker skin types
- urine also becomes a dark yellow colour
- stools (bowel motions) are pale
- the skin may become itchy
You can visit the AMMF for more information.