'I never ask my doctor how long I've got': 23-year-old Kristin Hallenga's health crusade to warn women about risks of breast cancer

At just 23, her GP told her a lump on her breast was nothing to worry about. Now Kristin Hallenga has advanced cancer – and devotes her time to alerting younger women to the risks

Crushed into a Beijing subway train each morning as she commuted to her first job in the travel industry, Kristin Hallenga joked with a friend that the otherwise exclusively male inhabitants of the carriage were "copping a feel". Aged just 23, she had no way of knowing that casual joke would soon come to symbolise her own personal crusade to alert young women to the dangers of breast cancer and revolutionise attitudes in the health service.

Before leaving for China, she had complained to her GP of a lump in her breast but the doctor had simply brushed the symptoms off as hormonal and told her to "go away and have a good time".

It would take eight months, three doctors and the dogged determination of her mother Jane, before the medical profession acknowledged her symptoms. By that time the cancer had spread to her spine, to a more lethal secondary illness. She will never know whether that eight months could have made a difference.

Sitting in the CoppaFeel! charity offices in London four years later, it seems inconceivable that this outwardly healthy, composed young woman now has cancer of the breast, spine, hips, pelvis, liver as well as sacrum and recently had to have a tumour removed from her brain. Her illness is at stage four and, as her blog relates in matter-of-fact terms, there is no stage five. Kris has grown used to the mournful "head tilt" she receives from strangers but she has no time for self-pity. She tells her story, not in search of sympathy, but in an attempt to warn other young men and women of the risks.

Breast cancer is very rare in the young – only around 30 women under 25 are diagnosed with it each year – but the tumours are more likely to be aggressive. "At my age I had a one in 15,000 chance of getting breast cancer so obviously I am a bit special," she says with a wry smile.

"I'd known something was wrong for some time. But the doctor told me to go away and have a good time and that was what I wanted to hear. In China the lump was not going away and a couple of nights the pain would wake me up."

Upon her return to the UK she explained to a second GP that her grandmother had suffered from the disease at 30, though she survived into old age after a mastectomy, but he still sent her home. "My mum said, 'I am not having this and you are going back'. I can still remember the look on her face. She felt so angry with their attitude."

Upon her third visit she finally succeeded in convincing the doctor to refer her for further tests. A month later she was called into a hospital room to face a doctor, assistant and nurse. Without waiting for her mother to finish parking the car, they broke the news to her. "It was all rather horrendous. My mum walked into the room and all she could see was me in tears. It was like an out-of-body experience. Suddenly I didn't feel it was me. All I could think was how is this real? How is it happening? My mum just said: 'It should be me, not you.'"

Worse was to come. After a series of scans, doctors confirmed that the cancer was secondary and had spread to her spine. The hardest thing, Kris says, was having to tell her identical twin Maren – who has since been tested and found to be clear – and her older sister. They had already lost their father at a young age.

Over the following months she endured a range of treatments including radiotherapy, chemotherapy and a mastectomy. "The mastectomy was not a problem. Knowing this thing was trying to kill me, I was just glad to get rid," she says bluntly. "One breast is not going to define who I am. I want to live."

Despite the tears and the pain of treatment, it was less than a month before she decided she had to warn others and CoppaFeel! was launched. "The day I was diagnosed, I was told there was a breast-cancer support group but I would be the youngest there. I didn't want to sit around talking about it. I had stuff to do," she says.

"I did some research and thought, why isn't anyone speaking to young people about this disease? Why didn't I check myself? There were some great campaigns in America, so I contacted them. I didn't have a mortgage, didn't have a marriage or kids. I could plough all my energy into doing something that could actually change behaviour and attitudes when it comes to this disease."

With Maren's help, she designed a logo and website and got permission to set up a gazebo at Beach Break Live 2009. During the student music festival, they handed out T-shirts and stickers with friends, including the man who would become her boyfriend. Four years on CoppaFeel! has "boobette" teams spreading the message in universities, schools, music festivals and youngmother groups. "We are trying to encourage people to get to know their boobs. Let's try and kill this scary stigma attached to cancer. If you find it early it does not have to be this horrendous disease," explains Kris. The charity's website is full of fun ideas, encouraging hundreds of supporters to run as giant "hooters" in marathons or organising a "boob flashdance" to raise funds.

Meanwhile, the team sends out monthly jokey text messages to remind people to check themselves. Well-known names such as TV presenters Fearne Cotton and Dermot O'Leary have been recruited to help tweet for the cause.

Even more fundamentally, Kris is now on the Breast Cancer Working Group and has attended meetings at the Department of Health. She is determined to change attitudes in the NHS, to encourage GPs not to be dismissive if younger women are worried. "We encourage all women of any age to be breast aware and follow the five-point code: know what is normal for you; look and feel; know what changes to look for and report any changes to your doctor without delay," a spokesman for the Department of Health said.

Today Kris praises the care she continues to receive at London's Charing Cross Hospital. But, despite her cheerful demeanour, she admits to the odd "wobble"; the odd bad day.

"They discovered a new tumour on my spine (in 2011). From one second to the next I couldn't move and they had to take me to hospital in an ambulance. Seeing the fear in my sister's eyes – that was the worst moment. I can deal with it, take the drugs. All my sister can do is watch."

Kris does not know her prognosis, and it is not a word she will even contemplate: "I never ask my doctor and my doctor doesn't tell me about it. Right now I am well and there is no point in looking to the future. I am certainly not as rock 'n' roll as I used to be, but I am very lucky. So far so good. Before, I didn't really know what happiness meant. Life is much more meaningful now. I have a sense of purpose. I get to do a job where I am my own boss and if I don't want to get out of bed in the morning, I don't."

There have also been incredible highlights such as when her work was recognised with a Pride of Britain award or when she was asked to carry an Olympic torch on part of its London route. "It was amazing. One of the best days of my life," she says. But her proudest moments have been saved for more personal successes: "The highlight is when CoppaFeel! really does work. There was this 26-year-old woman, Jenny, who was not going to go back to her GP until she read about CoppaFeel! She was diagnosed a week later with the early stages of breast cancer."

Listening to Kris's courageous determination, it is intoxicating to believe that she could triumph against the odds but nothing is certain.

The only thing one can be sure of is that she would have had a far better chance if there had been somebody like her there four years ago to warn her to try and catch it early.

coppafeel.org

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