Forgotten faces of breast cancer
Posted on Friday, 15th October 2010
It's a high-profile disease and millions are raised every year to help battle breast cancer. But while overall survival rates are rising, today the Daily Mirror joins the fight against the serious problem facing patients
You may have had the "all clear" but every breast cancer survivor will tell you the cloud of doubt is always hanging over you.
At the back of your mind you're worrying it could return - any time and in any part of your body. The worst possible news is to be told: "It's back."
Secondary breast cancer - in which the cancer cells spread from the first tumour in the breast to another part of the body via the bloodstream - doesn't make the headlines, yet it strikes 100,000 women in the UK. It is incurable but cancer care nurses themselves believe the support these sufferers receive is woefully inadequate.
Thanks to better awareness, better screening and new treatments, survival rates for women with breast cancer are rising overall. Eight out of 10 patients will live for at least five years and seven out of 10 for more than 10 years.
But the outlook for those with a secondary diagnosis is bleak.
Catching the cancer before it spreads is key as survival rates plummet if the cancer has spread beyond the breast - which is most likely to happen in the first two years after diagnosis.
Secondary tumours are most commonly found in the bone, the lungs, the liver and the brain.
One in five women can expect to live for at least five years after a secondary diagnosis, while only one in 10 will live for more than 10.
It's a grim prospect and something that mum-of-three Christina Quilter, at just 29, has already had to face up to.
She was originally diagnosed with breast cancer three years ago and it returned last year in an advanced and incurable form.
Christina says: "When you are initially diagnosed it is scary and new but there is a chance of cure.
"Once you get passed the shock you are raring to go and you've got this fight and you want to win it.
"But this time it cannot be cured so I know what is going to happen to me and I'm just hoping that it's not going to be soon."
Christina's husband Dan, 30, and children Cameron, 12, Aaliyah, seven, and George, five, have seen their mum battle cancer for more than three years. It was picked up after she started experiencing pain in her right breast. A mastectomy was followed by chemotherapy.
Then, six months after being discharged by her oncologist, Christina felt lumps appearing in her neck. The cancer was back and attacking her lymphatic system.
"This time I didn't ask what the prognosis was," says Christina, from Bury St Edmunds.
While a caring and efficient ser vice wheels into action for patients when cancer is first d i a g n o s e d , c a m p a i g n e r s believe the same excellent support does not extend to women suffering secondary disease.
Despite billions spent on breast cancer each year, a survey of specialist nurses by Breast Cancer Care revealed that 57% of them felt support was inadequate for women whose cancer had spread.
Christina says: "People talk to you when you are first getting treatment because they know there is a way out of it. They want to help you but there's little of that with secondary because there is no happy ending. It's hanging over my head and there is nobody there to help me."
Christina now goes into hospital every three weeks for a drip of the cancer drug Herceptin and has been having scans every three months.
Although Christina is happy with the way the hospital is treating her, she feels she was offered far more support with her first diagnosis.
"There is just something lacking for secondary cancer," she says.
"They assume because you have had cancer once you know what to do and how to feel. The emotional impact is immense. You feel isolated at best and abandoned at worst.
"There should be someone trained to look after women like me - the forgotten women."
Breast Cancer Care has launched a new campaign calling on the Government to monitor the number with secondary cancer and ensure they get emotional and practical support. Samia al Qadhi, chief executive of Breast Cancer Care, says: "If we do not know how many people are receiving a diagnosis of secondary breast cancer, how can we possibly meet their needs? "It is simply unacceptable when so many more people are living longer with advanced breast cancer that Christina and others like her are telling us they feel let down.
"While progress in treatments means that more are living with incurable cancer, the system is simply failing to keep up. We need to see an effectively joined-up service that ensures that no one ever gets forgotten."