When chemotherapy for cancer treatment was first developed, surviving cancer was such an incredible accomplishment that the side effects were considered an inevitable and acceptable price of success. At least the patients were alive. But this attitude has now shifted—and so it should.
About 1.2 million people alive in Australia today have a history of cancer diagnosis. It may have been 20 years ago, five years, the day before. Cancer changes your life. Of course, there’s a big difference between the experience of someone who has been diagnosed with brain cancer versus having a suspicious skin lesion removed before ever knowing it was cancer. But with more effective treatments, there are more Australians than ever living longer with—and after—cancer. And those people want not only to live but to live well. That means preventing and reducing side effects of cancer treatment. It means being emotionally and psychologically supported. It means managing the fear of cancer recurrence. It means bouncing back financially.
That’s what cancer survivorship care is all about. It’s also the research focus of oncologist and cancer researcher, Professor Bogda Koczwara.
Survivorship care should be provided to people both during and after cancer. People need support as they're going through cancer diagnosis and treatment. But they also need support afterwards as they readjust to normal life when so much has changed in their body and their emotional state, and as their family and friends grapple with their diagnosis. Some people recover physically, but experience substantial emotional or psychological issues. Others cope well mentally but are left with physical side effects, new conditions or disability caused by cancer or cancer treatments.
Support can’t begin only after a patient is cured. What if, for example, a person wants to be a parent in the future—but their treatment will affect their fertility? Doctors should be discussing IVF treatments or egg storage before using toxic measures to treat cancer. Support needs to start from the moment a person is diagnosed.
The initial concept of cancer survivorship was developed not by doctors and nurses, but by a cancer survivor. In 1985, a young man named Fitzhugh Mullan had a cancerous tumour removed from his chest and while the surgery was successful, he experienced a number of complications and ongoing health issues. He wrote about what he went through—what he was living with still—and, in doing so, shone the light on the need for more support for people after cancer diagnosis. His article led to cancer survivorship advocacy, research and organisations around the world.
Bogda is particularly interested in cancer patients that have other health issues, where cancer is not necessarily their main health problem. In these cases, clinicians need to balance competing risks when thinking of their survivorship. If a breast cancer treatment causes cardiac problems and the patient already has heart issues, you might get rid of the cancer but damage the heart and shorten their life. You might be better off with a less toxic cancer treatment with less risk to the heart, but higher risk of cancer reoccurrence. We don’t yet have great tools that help us balance these competing priorities.
Bogda is currently developing a program to ensure that patients are fit to receive cardiotoxic breast cancer treatments before they are prescribed. She hopes this will prevent unnecessary deaths from heart disease.
Another focus of hers is something most cancer clinicians don’t think about: their patients’ finances. One in five people diagnosed with cancer experience financial hardship. It’s not just about the costs of treatments and health care (which can be exorbitant). Cancer can prevent people from working, so they’re not earning income; this affects not only the person with cancer but often also a partner or parent. Perhaps they need more child care while they’re undergoing treatments, or they need to cover travel and accommodation to receive the treatments. Maybe they’re not able to return to the workforce after cancer thanks to the consequences of their treatment, disability, loss of confidence, or a swiftly changing job market. Perhaps their mental health has deteriorated. For those already in a financially vulnerable or unstable position, that situation can be exacerbated. The longer you’re away from work, the harder it is to return.
As we recognise more and more survivorship challenges after cancer, we need to rethink how cancer care is delivered. Oncology today is an acute discipline. Patients go to their oncologists with cancer and they want it gone quickly and completely. It can seem inappropriate for an oncologist to say, ‘Let’s forget about the cancer for a moment and focus on your financial position.’ They already have the complex task of treating cancer, dealing with side effects, encouraging changes of behaviour (e.g. healthy diet and exercise), and motivating the person to carry on with stressful treatment. If a patient is overburdened with all these tasks, we know that they may find it difficult to cope. You need to prioritise. But if some concerns—such as financial difficulty—are not addressed until later, the damage may already be done. Financial hardship can bring enormous stress to a patient who should be focused on their health.
It’s this thinking that drove Bogda and her team at Flinders to develop a website to help people maintain work or return to work early. Work After Cancer is a resource to provide advice to people diagnosed with cancer, their loved ones, clinicians and employers.
Bogda is thankful to be located at Flinders, which is home not only to oncologists but also psychologists, social workers, physiotherapists, and many others. Survivorship is something all health professionals need to think about. By drawing on a cross-disciplinary team, Flinders is tackling as many issues in survivorship as possible. Bogda says, ‘At the end of the day as long as we’re doing something useful every day, that’s all that matters.’ What they’re doing is more than useful—it’s important and appreciated work, caring for people throughout their time with cancer and into the future.
Professor Bogda Koczwara is the National Breast Cancer Foundation Fellow and a senior staff specialist in medical oncology at Flinders University and Flinders Medical Centre, where she leads the survivorship program. She is also the Lead in Survivorship at the South Australian Health and Medical Research Institute Comprehensive Cancer Consortium (COSA) and the Vice Chair of the Psychosocial Group of the Multinational Association of Supportive Care in Cancer. She is a member of the international Survivorship Taskforce for the Breast Cancer International Group. Previously, Professor Koczwara was President of COSA and Chair of the Australia Asia Pacific Clinical Oncology Research Development. Professor Koczwara has been recognised as a Member of the Order of Australia in January 2015 for her services to oncology through clinical practice, education and research. In 2018 she was nominated for a prestigious Women who Conquer Cancer Mentorship Award sponsored by the American Society of Clinical Oncology Foundation.
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