Long-term strategy needed for those surviving cancer
It was about 12 months after her treatment for ovarian cancer that Bec Secombe hit her lowest point.
Secombe, who was aged just 30 at the time of her diagnosis, coped remarkably well with the shocking news, saying she had made peace with her mortality. But when the surgery and months of chemotherapy were over, she sank into deep depression.
Her family and friends were encouraging her to get back to her pre-cancer life, but she was battling migraines and fatigue, she was anxious about the right way to live and she was beginning the painful process of grieving her losses.
“I felt very much isolated with my issues … in fact, I think I even got worse than I did when I had chemo,” she recalls. “Through the time having treatment and surgery I was so focused on the end result and staying positive and surviving. It wasn’t until that stopped that I was emotionally processing what had happened and the grief came. I had lost my job, my finances, a partner was no longer with me; I lost my fitness, my hair and my fertility.”
Secombe, from Adelaide, is among a growing population of cancer survivors whose healthcare needs don’t disappear when their treatment is over.
The good news story is that more and more people are surviving cancer. Thirty years ago about 49 per cent of patients survived five years after a diagnosis. Today, that rate stands at nearly 70 per cent.
And that means there are now nearly one million Australians living after a cancer diagnosis.
Preliminary results from the 1000 Survivor Study – an Australia-first project by Cancer Council Queensland surveying cancer survivors about their physical, emotional and practical concerns – reveal that about 80 per cent of survivors do not receive the care or support they need after treatment.
The study shows 94 per cent of the Queensland survivors surveyed experienced physical concerns following cancer treatment – most commonly involving energy, sexual function, concentration, neuropathy and pain – but 78 per cent did not receive care to address one or more of those concerns.
And about 95 per cent reported emotional concerns – including depression, grief and a fear of cancer recurring – but 82 per cent did not seek help for coping with one or more of those concerns.
Professor Jeff Dunn, Cancer Council Queensland CEO and secretary of the International Psycho-Oncology Society (IPOS), says: “What the figures tell us is that we need services. It is something for all of us; this is a community problem. It is not just something medical practitioners or the government or cancer councils can do on [their own]. It needs a concerted effort.”
A cancer diagnosis can profoundly influence people’s quality of life, even if they are physically well.
“A cancer diagnosis presents with it a whole range of other issues: social, emotional, practical issues – fears of recurrence, worries about jobs; for young people concerns about fertility and having a family, relationship worries, and for older people concerns about seeing your grandchildren and finishing things,” Dunn says.
International studies show that up to 30 per cent of people diagnosed and treated for cancer exhibit clinically significant levels of distress many years after diagnosis, with time frames varying for different types of cancer, he says.
In Queensland, the Cancer Council helpline (131 120) can arrange access to a range of services to help survivors.
“One thing we have been pushing very much here is screening for distress – it is a very important part of our work. Everyone who calls us will be screened for distress and referred to a clinical psychologist or psychiatrist if needed.”
Brisbane man Garth Stephens, 66, a prostate cancer survivor and ambassador for the 1000 Survivor Study, continues to attend a support group – both for his own sake and to help others – five years after he underwent a prostatectomy.
The surgery has left him with erectile dysfunction – an issue he says many men find difficult to discuss.
“I have got a fantastic wife and we work around it,” he said. “But it is a challenge.”
Despite the niggling concern that his cancer could recur, Stephens says his outlook on life is better than it was pre-diagnosis.
“You set new goals. Your outlook is more open, you get out and do more things and enjoy more rather than just work, work, work,” he says.
But the long-term effects of cancer vary widely and span physical, emotional and psycho-social arenas.
A British study published in The Lancet in 2013 showed that while depression tends to improve two years after a cancer diagnosis, anxiety is a cause of concern even 10 years after a diagnosis – among both cancer survivors and their partners.
“When patients are discharged from hospital care, they usually receive only periodic check-ups from their medical teams and this autonomy in the post-acute period can be anxiety provoking,” lead author Alex Mitchell of Leicester General Hospital in Britain wrote. “Efforts should be made to improve screening for anxiety and increase follow-up support for both survivors and their families.”
Across Australia, a number of cancer survivor centres have been established in recent years.
The Australian Cancer Survivorship Centre was set up in 2009, funded jointly by the Peter MacCallum Cancer Centre in Melbourne, where it is based, along with the Victorian Department of Health and the Pratt Foundation, a legacy of the late businessman Richard Pratt.
Manager Linda Nolte says the centre provides comprehensive cancer information and support, and facilitates patient’s access to integrative therapies including massage and meditation. It supports the health system to recognise survivorship – or post-treatment cancer care – as a distinct phase that not only requires follow-up with a cancer specialist but services to address emotional, physical and social needs, survivorship care plans, and better co-ordination with GPs, she says. And it is currently running a training program for GPs to help give them a better understanding of cancer survivors’ needs and late effects of treatment, so they can manage them in the community.
Dr Kate Webber, medical oncologist and survivorship research fellow at the NSW Cancer Survivors Centre at the University of New South Wales, says it was established because the needs of survivors are not well met by traditional models of follow-up care.
“Traditionally, people go back every three to six months to see their oncologist in a teaching hospital and check their cancer hasn’t come back. But the focus of that model of care is detecting a recurrence and screening for toxicity from treatment, it is not broader issues that many survivors face.”
At the NSW centre, patients are offered a one-off, hour-long visit where they go through their cancer history and any health or psycho-social problems and a care plan is formulated, linking them to the services they need.
Webber says many people set aside their other health problems when they are diagnosed with cancer. After treatment, they need help with lifestyle changes to reduce their risk of other chronic diseases.
Ultimately, she says, we don’t necessarily need more survivor centres. Rather, we need a way of teasing out the survivors who need long-term specialist support and those who need shared care with a GP, or self-management in the community.
Secombe, now 33, wasn’t aware of any services to help her after treatment. As she was only 30 when diagnosed with ovarian cancer, compared with the average age of 63, she didn’t feel a support group was the answer.
She suggests what could have been useful was some type of case manager to help her navigate the healthcare system and find the services she needed.
Professor Bogda Koczwara, convenor of the recent 2015 cancer survivorship conference in Adelaide, believes we need a national strategy on survivorship care, along with a minimum standard of care for survivors.
“The first step to address the gaps in survivor care is to acknowledge that it’s a genuine issue and deserves our attention,” says Koczwara, professor of medical oncology at Flinders University in Adelaide.
Australia, along with many other developed nations, is now turning its attention to the survivors and the need for data on their needs, she says.
“We are seeing more and more cancer survivors and they do have healthcare needs and they are voters and taxpayers and we are beginning to understand that they have more chronic conditions than the general population,” she says.
Koczwara adds: “It is a very gratifying area [to work in] because you really can see how wonderful a success it is to be free of cancer. But there is a price to pay for everything and the challenge is to make sure we address the challenges as well as the successes.”
This article was first published in the print edition of The Saturday Paper on Apr 11, 2015 as "Survival strategy". Subscribe here.