It’s easy to assume that once a person who has gone through cancer treatment and is declared ‘cancer-free’, that’s the end of their health worries. But data from Sydney Children's Hospital reveals that 81 per cent of childhood cancer patients struggle with a number of health problems later in life, with issues such as heart disease, obesity and osteoporosis listed as common side effects.
For Michele Joyce, 48, these stats are not surprising, but it’s comforting to know there are others who have had a similar experience. Diagnosed with a Wilm’s tumour in August 1972, one month before her 5th birthday, Joyce had surgery to remove the tumour, plus her right kidney; extensive radiotherapy for six weeks and chemotherapy over almost two years.
“The biggest thing I remember is the vomiting,” Joyce tells SBS. “I was having treatment when I while I was at school, I do remember being laid up in radiotherapy and marked up – I don’t think you would ever forget that.”
While she was declared cancer-free following her intensive two-year treatment, Joyce says it wasn’t until her teenage years that she began to feel the emotional impact. “I became self-conscious knowing my body was different. It’s not symmetrical,” the mother-of-two explains. “I’ve got muscle wastage on my right side. I had radiotherapy from my armpit to my pelvis. My pelvis developed unevenly, so I’ve got scoliosis, though I’m very good at hiding it.”
Joyce credits her supportive family for helping her cope with the emotional stress during her teenage years. “My mum was fantastic. For example, she’d take me shopping and make sure I got the right swimsuit to make me feel comfortable,” says Joyce, who suffered poor body image following her treatment. “I didn’t share my problems with my friends back then, I didn’t think I could. But now as an adult I think, most teenagers probably had the same problems for different reasons!”
These days, Joyce leads a “very normal and happy life”, though she does remain vigilant about her health. At 22, she was diagnosed with early invasive cancer of the cervix (which was caught thanks to a regular pap smear), and underwent a hysterectomy at 29, and so her life is a busy schedule of check-ups and follow-up appointments. “It’s like a never-ending cycle of care,” she says of her regular exercise physiologist and osteopath appointments to manage her scoliosis. “It can’t be fixed so it’s all about maintenance.
“As far as the radiation, I have yearly ultrasounds on my organs,” she explains. The radiation therapy also means Joyce has a higher risk of breast cancer, which means she has yearly mammograms. While she says she "keeps things in perspective", she has no reservations asking questions about her health. “I still go back to the Sydney Children’s Hospital Clinic,” she says. “They don’t make me feel like I’m paranoid if I do have a concern, it’s treated seriously and we can talk about it.”
Joyce’s positive experience of follow-up care isn’t always the case. According to Associate Professor Claire Wakefield from the University of NSW, there needs to be more research into how medical professionals can support childhood cancer survivors and their families in the decades after treatment. “On top of the prevalence of life-changing late effects that we have found childhood cancer survivors struggle with, our data also shows that there is no consistent model of care,” she explains.
“When survivors are discharged from their clinic, they are often transferred back to their GP. We have found that GPs are not familiar enough with late effects and not confident enough to adequately care for childhood cancer survivors – many young survivors have to become their own ‘care integrator’.”
The Cancer Council NSW has awarded A//Prof Wakefield and her team with $2.2 million in funding for a program to reduce the incidence of physical and mental illness after cancer treatment, and improve the quality of life of survivors and their families. The program will include six interventions to help address the need for better support.
Friday August 26 is Daffodil Day in support of victims of cancer. Head to daffodilday.com.au for more info.