For decades medical science has long focused its research efforts on saving lives, now it's turning its attention to an emerging research field - survivorship. Louise Williams reports.
Professor Andrew Lloyd had always imagined his career as an infectious diseases physician and researcher would take him back to the tropics, where he lived as a child and had experienced the debilitating effects of malaria and dengue fever first hand.
Instead, he's heading up Australia's first comprehensive centre for treatment and research for cancer survivors at the University of NSW; his ground-breaking work on the mysterious "fatigue" syndromes which can follow serious illnesses having led to his pioneering role in the emerging field of "survivorship".
While medical science has long focused its research efforts and funding dollars on saving lives, its very success has raised new -- largely unanswered - questions about what it means, physically, emotionally and practically, to survive major diseases like cancer.
"They've been told the great news, they are cancer free. They are looking good and their specialists are happy to say 'see you later'.
"But for many people that's not the end of the story," says Professor Lloyd, the Director of the new NSW Cancer Survivors Centre, a consortium of clinicians and researchers from UNSW, and affiliated teaching hospitals including the Prince of Wales Hospital, the Sydney Children's Hospital and the Royal Hospital for Women.
Only 50 years ago a cancer diagnosis was virtually a death sentence. Today, 70 per cent of childhood cancer sufferers are cured and two thirds of adult cancer patients live for at least five years, many are cured. Oncology has been advancing so steadily that experts anticipate that within 10 to 20 years every childhood cancer will be curable and that adult cancer will be "manageable" like other chronic conditions, such as diabetes.
But, at the same time global trends suggest cancer rates will double by 2030 - mainly because we are living much longer. That means a burgeoning population of cancer survivors. Today, one in 20 people in the United States is a cancer survivor. In Australia, there are 655,000 cancer survivors and people "living with cancer", and 115,000 new cases a year. "Cancer survivors fall between the cracks," says Lloyd.
They might discover they are suffering from relentless fatigue, their general health may have been compromised by aggressive treatment, their bones may have become brittle, they might find their fertility and sex lives affected, or they may be anxious or depressed and unable to work or function as before.
"They've been used to getting specialist care. Now they turn up back at their GPs saying they feel bad or they can't cope and the GP doesn't know what to do or where to send them," he says. "In the future, we are going to need a whole network of Cancer Survivors centres all over Australia. There is a very big gap to fill in both research and service delivery."
The NSW Cancer Survivors Centre is a clinical and research facility which aims to develop evidence-based care and support services, which can be replicated elsewhere. "We want to create the gold standard," Lloyd says. Part that work is already underway in collaboration with the UNSW Lifestyle Clinic, which offers "lifestyle" interventions, including exercise, mood management, and dietary advice to help those with chronic conditions.
Fatigue is his particular area of expertise. Having concluded early on in his career that the developing nations of Asia - he spent time as a child in the Philippines and Papua New Guinea because his father was in the armed forces - needed clean water and primary health care more than his specialists knowledge of infectious diseases, he turned his attention to home.
In Dubbo, Lloyd conducted a well-known study into patients suffering chronic fatigue following glandular fever, Ross River fever and Q fever; at a time when opinion was divided over whether or not chronic fatigue was psychosomatic.
Surprisingly his research found that although chronic fatigue was real, it was caused by neither of the obvious suspects; it was not a post-infective auto -immune disorder or persistent infection.
Instead, it was likely that the high numbers of cytokines - immune agents which travel through the blood turning on immune cells when the body is fighting infection - had temporarily altered the brain patterns of the 10 per cent or so of patients who suffered post-infective fatigue. Although their bodies were better, their brains still reacted as though they were sick; a syndrome which could persist for 12 to 18 months with a range physical symptoms including severe fatigue and generalised pain, as well as the inability to concentrate and think clearly.
How the Dubbo study led to cancer survivors was the result of Lloyd chatting to oncologists in the course of his clinical work. Patients who were cancer free also suffered from "post cancer fatigue" and the so-called "chemo fog" or cognitive fatigue, he says. So, he led another major study of patients with breast cancer discovering their fatigue and pain patterns over five years mirrored those suffered by the Dubbo cohort.
"We found the symptoms were pretty indistinguishable so there may well be a common fatigue phenomenon, triggered by different factors." And, as Lloyd and his colleagues were already well on their way to successfully treating chronic fatigue, there was every reason to expect they could treat "cancer fatigue".
"At any one time one per cent of the Australian population suffers from some form of chronic fatigue, not counting those in a cancer setting -- with hundreds of thousands of cancer survivors - in combination this is a very big disease burden," he says.
The treatment is based around "lifestyle", he says. Drugs might be needed to control pain, depression or sleep patterns so that patients can begin to exercise again, both physically and mentally - by doing cognitive "brain training" - in supervised sessions which push them a little bit further every day.
Patients who were too tired to get out of bed slowly regain their physical strength and mental acuity, he says. The approach is similar to cognitive behaviour therapy (CBT) in psychology, which helps overcomes problems by getting people to think and behave differently, and to become 'desensitised' to their worries and fears. In relation to fatigue the key goal is to help people improve their capacity to manage day-to-day tasks despite the ongoing symptoms.
But, as Lloyd says, the NSW Cancer Survivors Centre can't take everyone. The fatigue program already has a six-month waiting list. "We have good evidence that says CBT works for chronic fatigue, and we are currently conducting a trial of this therapy for patients with post-cancer fatigue. It is clear we need more research to better tailor programs to individuals and to establish treatment models that can be replicated elsewhere".
As well as treating post-cancer fatigue, the NSW Cancer Survivors Centre will facilitate care for cancer survivors by a range of medical and health professionals for fertility issues, osteoporosis, premature heart disease and diabetes, mental health issues and second malignancies.
The Centre will enrol patient volunteers in an Australian-first research effort to determine what challenges cancer survivors face, and to develop new diagnostic tools and treatments.
"We need services developed away from the traditional hospital settings which treated the disease as we are trying to integrate patients back into society. The focus is on achieving a better quality of life (after cancer)".Do you have an idea for a story?
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