Cancer survivors neglecting long term care
Specialists are trying to reach out to childhood cancer survivors who have withdrawn from the medical system, saying they are at a much higher risk of serious health problems later in life.
Childhood cancer survival rates are now the best they have ever been, with roughly 80 per cent beating their illness.
However, researchers at Sydney Children’s Hospital say two-thirds of survivors will suffer a serious health problem later in life, and the majority are not receiving proper follow-up care.
Associate Professor Richard Cohn, the director of the Survivorship Program at Sydney Children’s Hospital, says there is a growing number of people in need of long-term support.
“It’s very exciting that we’ve reached a point where we’re not only concentrating on the cure but on the quality of the cure that we achieve with childhood cancer patients,” he said.
“All organs are in fact at risk, and there can be effects on the heart, the lungs, the kidneys, the liver… and we know that patients who’ve been treated for one cancer, for example, are at risk of developing second cancers.”
Professor Cohn says for that reason, it is extremely important that survivors return to long-term follow-up clinics to prevent and treat a range of conditions.
“We know from patients who we’ve followed over many years that many of the late effects, the side effects of chemotherapy radiation and surgery… may only present many years after the completion of therapy,” he said.
In an effort to coax survivors back to long-term clinics, cancer centres across Australia and New Zealand are surveying survivors about their experiences.
They will be asked about the barriers to receiving proper follow-up to help develop a new model of care.
Behavioural scientist Dr Jordana McLoone is coordinating the study and says there are a range of factors contributing to the low rate of return.
For some people, returning to the paediatric hospital is not a pleasant memory and for some people who’ve now grown and become adults, they too don’t like to return to a paediatric setting for their care.
Behavioural scientist Dr Jordana McLoone
“Some of them can be very practical reasons,” she said.
“Sydney Children’s Hospital has a large catchment area and so for people who live hundreds of kilometres away that can be difficult.
“For others, they might feel that they’re quite healthy. Often late effects don’t actually present until many years down the track.”
Dr McLoone says many survivors also find the journey back to their treating hospital a traumatic experience.
“There are always psychological and emotional factors,” she said.
“For some people, returning to the paediatric hospital is not a pleasant memory, and for some people who’ve now grown and become adults, they too don’t like to return to a paediatric setting for their care.”
Survivor says she feels responsibility to ‘give back’
Michele Joyce survived a rare kidney tumour at the age of five. Forty years later, she has two adult children and a job dispensing chemotherapy at Campbelltown Hospital in Sydney.
But she says it has not been a smooth road. Despite being vigilant in her health checks, Michele has already suffered a second cancer.
At 22, she was diagnosed with cervical cancer which was caught early during one of her regular pap smears.
She also suffers from scoliosis and muscle wastage down one side of her body as a result of the radiotherapy she underwent as a child.
Michele’s doctors had warned her she may not be able to have children, but thanks to the advice of specialists she knew to try early.
“The first call I made was back to Sydney Children’s Hospital, to my childhood specialist. I was so excited, I wanted to tell him that I had fallen pregnant,” she said.
I have this keen sense of responsibility to give back for them saving my life. If I keep going back I’m giving them the hospital and the researchers the information that I’ve got.
Cancer survivor Michele Joyce
“He congratulated me, but also added that he had to tell me that there were risks in being pregnant. Although I’d overcome the risk of not being able to have children, he said there were risks that I needed to be aware of throughout pregnancy.
“The main ones he listed for me were miscarriage, early labour, and birth defects… I was told I could have children with heart defects and club feet, different things from the drugs they’d used on me as a child.
“I’m lucky none of those things happened.”
Ms Joyce says her health is not the only reason she returns religiously to Sydney Children’s Hospital.
“I have this keen sense of responsibility to give back for them saving my life. If I keep going back I’m giving them the hospital and the researchers the information that I’ve got,” she said.
“They need to know the side effects and the late effects… they’ve been able to improve the treatment from knowing what happened to me.
“It works both ways. I get a lot out of it and it gives back to research and the hospital and the people that saved me.
Canteen bridges gap between teenagers and hospital
Canteen is one organisation that works with survivors at a time that many withdraw from the medical system.
Chief executive Peter Orchard says the transition into adulthood represents a high-risk time for someone who has come through cancer treatment.
“Throw into the mix cancer treatment and all the side effects of that… and it can be so hard to deal with that they don’t want to go back near it again,” he said.
“There can be really negative associations with hospital and treatment and so getting people to stay connected is a bit of a challenge.”
Canteen is rolling out services at new federally funded youth cancer centres around the country.
Mr Orchard says the new centres are designed for people aged between 15 and 30.
“It’s in recognition of the fact that in an adult environment young people often feel like an alien species… so the youth cancer services we fund play a critical role in trying to help them feel comfortable in what is essentially an alien environment,” he said.
If you think you are eligible to take part in the study, you can find it online at http://www.behaviouralsciencesunit.org/long-term-follow-up.html