KEY POINTS:
Surviving adolescence is enough of a challenge for most teens, without also having life-threatening cancer.
Teenage cancer sufferers face weighty decisions, like whether to bank sperm or harvest eggs, because radiation could render them infertile. They have different social and emotional needs to adults and children with cancer, but our health system doesn't seem to share that view.
It's not uncommon for teenagers to be in cancer wards with babies, children and elderly people. Even on a medical level, they must be treated as a child or an adult; there is no middle ground.
Perhaps it's not surprising, then, that the chance of survival for 13- to 24-year-old cancer patients is static. The five-year survival rate for adolescents remains at 70 per cent, though the survival rate for children has risen to 80 per cent. The adult survival rate is lower, at 61 per cent, but it is also improving.
About 100 cases of cancer in adolescents is diagnosed each year. What could kick-start the survival chances for adolescents?
First, say doctors, we need better access to clinical cancer trials for young cancer sufferers.
Second, the creation of dedicated treatment facilities for teenagers will address their psychosocial needs. Those needs are often overlooked, causing some teenagers to give up on treatment cycles.
This year, we are one step closer to dedicated youth facilities. CanTeen, a high-profile organisation to support youth with cancer, is working with the Starship hospital in Auckland to create New Zealand's first cancer treatment facility for adolescents.
The unit, designed by CanTeen's members, will be open by the end of the year. It will give personalised care to young patients, and could inspire the other two main cancer centres, in Wellington and Christchurch, to develop their own.
"Teenage cancer sufferers are ordinary youth," says CanTeen's chief executive, Roger Hill.
"They want to relieve the boredom. They want a room painted purple and pink, with bean bags. They don't want to be told when to eat; they snack when they like. Their body clocks are different; they stay up late and sleep in. They ask, 'Why can't I play music in this ward? Why don't you get some soundproof walls?'
"Image is important, so they want to look great all the time too."
Guy Alexander met those issues when being treated for cancer at 13. Now 18, the Aucklander has finished school, begun a business degree, started a small telecommunications firm, cycles most weekends and is still involved with CanTeen,.
He was treated in a "pink, dated, hostel-type four-bed room".
But it's the little things, he says, that linger; to this day he cannot stand the sight of Fanta because of a bright orange drug he took during treatment.
Mira Stanton, who had Hodgkin's lymphoma when she was 11 and is now 23, said: "You just can't forget the things that went on during treatment."
Stanton is using her experience to mentor young patients by visiting them in hospital, and will join CanTeen's committee this year.
"It's hard for me to see some of those younger ones in hospital. When I was their age, I couldn't see what the fuss was about. I wasn't worried I was going to die, and my parents tried to be strong in front of me.
"As a young person, you just take the process as it comes. . . Now, I'm older. I'm looking in from the outside, and I can see just how much is left for us to do."
Specialist youth centres also have the ability to take on the roles of social workers, counsellors, teachers, youth workers, psychologists and psychiatrists.
This is because research shows many young cancer sufferers have had very poor relationships with their own doctors and health services. They still need to be educated about safe sex, drugs and alcohol.
So, is there any evidence that having dedicated treatment units will improve survival rates?
Melbourne's Peter MacCallum Cancer Institute has created a dedicated youth centre, and also uses roving teams to go to remote areas.
The centre's adolescent services manager, Kate Thompson, says creating a unit in New Zealand will achieve little in itself. She believes a creative approach to treating and supporting young people is needed most.
"First you need the expertise and skills," she says as she shows the Herald through Peter MacCallum's Melbourne campus.
"You shouldn't start with an empty building. But we do need spaces that are pleasing for youth. There need to be diversions; technology and laptops to keep in touch with school and friends. There need to be events, visits, and interaction with other youth.
"Those youth who don't beat cancer often don't get to die in their place of choice, at home with family. Instead, they die in hospitals or palliative care units. It's just not acceptable."
Last month, the Government signed a "service specifications" document for adolescent cancer. It is considered a big step toward improving services for adolescents.
Recent successes include adding oncology nurses and teams throughout the country.
CanTeen will finance overseas training for specialists, and train more psychologists to work with youth in the very early stages of diagnosis and treatment. Eyes are now on the Ministry of Health to take the lead.
"The data is very clear; the sector needs to invest more," says Ken Khamly, an oncologist at the Peter MacCallum Centre.
"Without the research, we can't prove whether new treatments work, and we can't identify new drugs like Herceptin, which came from basic lab research, and led to clinical trials.
"We also know that patients who take part in clinical trials tend to have a better chance of survival than those who don't. Adolescents need that chance too."
The Ministry of Health's clinical director for cancer, Dr John Childs. says that theoretically, they should have that chance.
Cancer trials use new research and medication to tackle the disease. Participation in a clinical trial improves chances of survival. Eighty per cent of child sufferers take part in clinical trials, only 10 per cent of adolescents take part.
Some doctors believe that until more teenagers can take part in more trials, the survival rate for adolescents will remain static.
The Health Ministry says it's difficult to put teenagers into those trials because of New Zealand's small size and the small number of teens with cancer.
But to improve access to trials, says Dr Childs, we need to improve emotional support services for youth with cancer.
The director of the South Island's child cancer unit, Rob Corbett, said what was needed was structural resources and data management from the Government to enable more trials.
He suggests that some young people are under-dosed in chemotherapy, for example, but we don't have enough research, data and clinical trials to confirm that.
Dr Lochie Teague of the Starship said: "Children often encounter leukaemia and brain cancer, while adult cancers include breast, bowel and prostate cancer. The types of cancers affecting many adolescents are more complex, adding extra challenges to the state of clinical trials."
The cancer control strategy also highlights the need to reduce inequality between patient groups, including on the basis of age. But until the health sector and the Government gain momentum on clinical trials, CanTeen is focusing on the emotional and social needs of the patients.
