Neglected cancers real lives
At 11 Luke Ryan was diagnosed with an osteosarcoma (cancerous bone tumour) in the back of his left knee. He had 12 months of chemotherapy with five different agents, enduring three-to-five-day hospital stays with breaks of 10 days between each one. He remembers the treatment as ‘A lot, a long time and just beyond horrendous’.
‘Three months in, I had a seven-hour limb salvage operation that left me with a full knee replacement, a slight leg extension and half a dead person’s femur, and without most of my quads. It was not fun.’
Even in a close and comparatively well-off family, Luke says it’s hard to overstate how tough that year was for everyone.
Following treatment Luke was monitored for five years and then the month before he finished school, his doctors told him he was cured. Luke says he cried, not from joy, but because he had survived.
Then when Luke was 22 he was diagnosed with sarcoma for the second time, this time in his right arm. He had just finished an arts degree at Melbourne University and was part way through a law degree.
On this occasion, however, the treatment was much easier to tolerate with two nine-week batches of chemotherapy and six weeks of radiotherapy. Three to five days in hospital became two to three hours. ‘I was energetic, healthy and for the first time in months no longer crippled with pain. Chemotherapy made me feel substantially better than I did before. It was really something.’
Luke has been clear of sarcoma for eight years now and his monitoring is being wound down.
Receiving a rare cancer diagnosis not once, but twice, has made Luke acutely aware of the importance of medical research. ‘The change in treatment methodologies between my two tumours and the impact that had on my lived experience cannot be overstated – in the first, an intolerable barrage of crippling chemotherapy that almost killed me. In the second, a well-measured regime that allowed me to continue on with my life largely unchanged. That happened in just 11 years. Incredible things can be achieved, so long as we continue to work towards them.’
“At 18, I was diagnosed with a rare cancer – gastrointestinal stromal tumours – and given 12 months to live,”
says 40-year-old Sarah McGoram, who is now enrolled in Garvan’s Molecular Screening and Therapeutics clinical trial. “I decided to fight and was determined to stay alive for as long as possible. I have lived and battled cancer for the majority of my life. In that time I have graduated from university, had a teaching career, married my husband Tom and had a beautiful baby boy, George – all while juggling the disease.”
Despite the news being devastating, Sarah was very fortunate to have the correct diagnosis made. Her cancer is so rare that there were only 15 known cases in Australia at the time. Fortunately, research had been published only six months earlier that provided the pathologist with the information he needed to avoid the traditional diagnosis that would have led to ineffective – and possibly deadly – chemotherapy.
Since then, she has transitioned from one drug to another in order to manage her disease. “With every progression of my disease, a new drug therapy has been developed, or surgical technique evolved, giving me the chance to live a little bit longer. I am riding the wave of medical research, and winning.”
Transforming lives through research
“What is clear from Sarah’s story is that science has the power to completely transform lives, turning a death sentence into a rich, productive life by any measure,” says Professor David Thomas, head of Garvan’s Cancer Division. “The challenge is to bring science into medicine in time frames that are meaningful to families like George, Tom and Sarah. That is what we are working to do.”
While Sarah has plenty to do in surviving with her disease every day, she doesn’t stop there. “Medical research and clinical trials in areas like genomic medicine and immunotherapy could hold the key to finding personalised treatments and ultimately a cure to our diseases,” she says. “I so appreciate the support that companies like Paspaley, AccorHotels and Vodafone give to clinical trials. It means people like me can contribute to medical research and access the latest treatments.”
Sarah fundraised to help others when she climbed Mount Kosciuszko this year. “I’ve now lived with cancer for 22 years. In that time I have had dozens of months when I have been extremely sick and four moments when I came terrifyingly close to dying – but I didn’t. I am still here fighting for a cure, fighting for more funding for research, fighting for equitable treatment for all cancer patients, fighting for more time with Tom and our son George and fighting for time to return to teaching and contribute to our community.”
“Watch out world: I’ve got a whole lot of living left to do.”
Find out how you can help fund projects to support people like Sarah.