Maddy Powell has been in remission since 2010. Picture: James Elsby Source: Sunday Mail (SA)
IT STARTED small, small enough that 17-year-old Maddy Powell thought the lump under her rib was just a muscle knot, maybe a cyst at worst. nothing to worry about.
But as months passed, and that tiny lump grew and grew and began to protrude beneath her skin, and as her mum and dad started to worry, Maddy started to worry a little too.
It’s a cliche but only because it is true – just two days into Year 12, with her whole life ahead of her, Maddy never thought for one moment that that lump could be anything sinister, anything that could possibly threaten her hopes, her dreams, her life. She’d just bought her first car, had friends, a boyfriend, people who loved her.
But in February 2010, she discovered the golf-ball sized lump was a synovial sarcoma – a rare, aggressive cancer that relishes the soft tissues and most often targets our young.
"I remember the doctor said the word tumour, and I froze on that word," Maddy says.
"My head was reeling. I knew what it was, and that it was associated with cancer, but I wasn’t certain one always meant the other.
"then she said the word cancerous, and there was no way around it.
"I was in absolute shock. I spent the rest of that day trying to get my head around it, as did my parents.
"we went to the beach for a while, just talking on and off about it. we all cried at some point. I remember that I was so worried of how everyone would react. My brother, sister, best friend and boyfriend in particular. When should I tell them? what would I say? How would they treat me when they found out?"
Scientists have been searching for a cure for cancer since Hippocrates first penned his oath.
At various times it has been thought that surgery would be the ultimate cure, then chemotherapy, then radiotherapy.
The problem is, the search is futile. no matter what we have been told, there is no one cure for cancer.
And it is highly unlikely that there will ever be.
That’s because the word "cancer" covers a vast range of heterogeneous diseases of different causes, sites of origin, and manifestation, that all have one thing in common: the proliferation of cells that refuse to die.
To put it basically, cancer is an accumulation of mistakes in DNA.
When the code is altered as we age or mistakes happen because of exposure to chemicals or inheritance, the genetic code becomes faulty and the cell can then begin to grow out of control.
And even disease arising in the same organ can be wildly different.
Breast cancer can differ broadly from one case to the next, with different causation, treatment and prognosis. While proselytising the search for "the" cure does wonders for fundraising, it doesn’t do justice to the wide range of amazing and innovative work being done by researchers and doctors around the world and right here at home.
Real-life work that seeks to address cancers from one end of the spectrum to the other, from common lung and breast cancers, to obscure cancers that twist in the gut or secrete themselves in the joints.
Local research is covering the spectrum of cancer research, with studies into prevention, management, treatment and cures taking place in institutions across the city. And huge advances are being made.
Just off Frome rd, tucked behind buildings that house the stream of students studying to become doctors, researchers at the Centre for Personalised Cancer Medicine at the University of Adelaide are investigating the building blocks of cancers – their DNA.
Dr Paul Neilsen, who lost his 18-year-old brother Brad to Ewing’s sarcoma after a five-year illness, is researching new therapies that activate a protein known as p53 – a protein known to trigger cell death in sarcoma cells which can lead, in turn, to the death of the tumour.
Additionally, these treatments only kill cancer cells so don’t have the debilitating side-effects of traditional chemotherapy.
"My focus comes from my brother," the quietly spoken Dr Neilsen says.
Between 10 to 20 per cent of cancer in children is sarcoma, but while the disease reacts well initially to chemo it can come back. If a patient with Ewing’s sarcoma has a recurrence of their cancer, they only have a 10 per cent chance of survival.
His boss, Professor David Callen, was a geneticist, working on the Human Genome Project on Chromosome 16, before moving into cancer research.
"Cancer is a very plastic thing; we hit it with one treatment and it will evolve and become resistant to that treatment," he says.
, the problem is it also kills all the normal dividing cells, which is why you have side-effects like loss of hair and susceptibility to infection."
Prof Callen is hoping his research into cyclotherapy – a new approach where a pre-treatment stops normal cells from growing so that when chemo takes place they are not killed along with the cancer – could ease the suffering of many cancer patients.
"Tumours are resistant to the pre-treatment," he says.
"we then hit them with the chemo which will kill the tumour but not the halted normal cells."
"we have proof of principal in mice."
Filled with youthful determination, Maddy decided to persist with her Year 12 studies while going through cancer treatment.
"being so young, and the diagnosis being so sudden, I was completely convinced that I would get through treatment and out the other side."
Maddy started treatment the week after her diagnosis, a sign she sees now of how serious her disease was.
She began with 10 rounds of radiotherapy – she’d lie on a table under a large machine that directed a concentrated radioactive beam into the heart of the sarcoma – and would travel, every day after school, from Gawler to the Royal Adelaide Hospital for the treatment.
Exhausted, she would sleep the hour each way in the car.
While the radiotherapy was successful in shrinking the tumour by a few centimetres, Maddy still had to face surgery to remove the rest of the mass. The sarcoma had grown inside her left rectus muscle – one of the long ones at the front of the abdomen that makes up one side of a "six-pack" – and the safest option was to remove the entire muscle, with the tumour intact, and to replace it with surgical mesh.
Professor Dorothy Keefe, the director of the SA Cancer Service, has been working as a medical oncologist for 20 years, treating patients with breast, lung and gastro-intestinal cancers, especially those who are plagued with terrible side- effects.
"I say to my patients, I don’t like cancer, but I like the people who get cancer," she says.
"I have the privilege of meeting really interesting people in a really difficult time of their lives and I get to help them through it."
As an oncologist and researcher, Prof Keefe sees both sides of the cancer coin and is most passionate about lessening the side-effects of treatment, often the hardest part of battling cancer.
With every patient’s disease inherently different, Prof Keefe believes in the wisdom of personalised, targeted treatment.
Drugs to combat side-effects have come a long way in recent years, with many including mouth ulcers, nausea and vomiting and diarrhoea now able to be managed or even prevented in many patients.
"I look forward to the day we don’t have to treat people with toxicities, but I don’t think that will happen in my working life," she says.
"A total of 70 per cent of people with cancer will now live more than five years, it’s a much less bleak situation than it was."
In a building behind Prof Keefe’s office at the RAH lies the Centre for Cancer Biology, with Professor Angel Lopez at the helm.
He is a youthful-looking bloke at 59, who speaks with fondness of his birthplace in Rosario, Argentina, the home of the jacaranda.
With a PhD in immunology, Prof Lopez eventually began work at Melbourne’s Walter and Eliza Hall Institute of medical research alongside Professor Ian Frazer, who would go on to develop the vaccine against papilloma virus/cervical cancer.
He is now deeply involved in trying to understand the basics of cancer development, progression and relapse with his team on the cusp of discovering how to kill the leukaemia cancer stem cell.
"My lab made a unique drug a few years ago with the ability to preferentially identify and kill the stem cells that start some blood cancers," he says.
"If we succeed it would show that some leukaemias may be cured, and maybe other cancers too."
Clinical trials on some leukaemia patients will start very soon.
Prof Lopez believes mapping an individual’s DNA is the way of the future.
"Ten years ago it was a dream, but now it’s feasible; the cost and the time it takes are reducing," he says.
"it won’t be long before people give blood for a test and get a DNA profile which gives susceptibility indications."
Colleagues are absorbed in researching several innovative ideas, including a study into micro-RNAs and the ways in which they control cancer. it has been discovered that the loss of micro-RNA control can cause metastases, which is what kills patients with invasive cancers.
Another is looking at treating lymphoma without chemotherapy.
"There is a misconception that cancer isn’t curable; it is, there are many that have been."
"When the layman imagines cancer, they are thinking of someone riddled with cancer rather than treating one discovered early in the disease. Our clinics are full because of the new treatments and better outcomes in many diseases."
While Maddy’s scans came back clear after her surgery, doctors recommended she start chemo because of the aggressive nature of her cancer.
"There was no choice in the matter. I was told what to do and I did it, trusting them totally to make the right call," she says.
"The worst part of the illness was feeling like it had taken my whole life away."
Her lowest point came just before her 18th birthday, when she was hospitalised due to an infection and had to cancel her party.
"I was determined to have an 18th birthday like every other teenager but I was admitted to hospital that night. I stayed in for five days, they gave me a blood transfusion to get my blood levels back to normal, and kept me under close watch," she says.
"The worst part of the treatment really was the feeling. It’s just a horrible sensation – like having a really bad case of the flu, being seasick and dehydrated all at the same time.
"The physical changes have been difficult to adjust to. I coped fairly well with losing my hair, and I was able to joke about it easily, but it’s still something you hope never to go through. I associated so much of my femininity with my hair, that losing it was a massive blow to my self-esteem."
Professor Pam Sykes believes the future doesn’t lie in cure, but in prevention.
An expert in preventative biology based at Flinders Centre for Innovation in Cancer, Prof Sykes is looking at ways to harness the body’s natural defence mechanisms to stop cells that are on their way to becoming rogue by investigating something that has been traditionally used to treat already established cancer – radiation.
Data has shown that a low dose of radiation can increase the time it takes for animals prone to cancers to develop tumours.
"We’re trying to understand what doses have a protective effect and why," she says.
"It’s a little bit like UV. A little bit is good for Vitamin D levels. too much is harmful and can lead to melanoma.
"The data are very promising.
"If we could show that low doses of radiation act like an immunisation, in getting the body to recognise and get rid of damaged cells, that would be a huge change in our thinking for cancer prevention approaches.
"I feel in my gut that this will be something. it has been shown that a high dose of radiation will give mice cancer, but a low dose given 24 hours earlier will reduce the amount of cancer created by the high dose."
Poland-born Professor Bogda Koczwara, who is director of Cancer Services for the Southern Adelaide Local Health Network and director of medical oncology at the FMC, says there is a shifting mentality in cancer treatment from cure to appreciating the complexity of the disease.
Professor Koczwara, along with Prof Sykes, is a part of the revolutionary Flinders Centre for Innovation in Cancer, which integrates patient care with research and education and was launched on Thursday.
"Some people will be cured and some will live with a chronic disease that has to be managed," she says.
"There are 700,000 cancer survivors in Australia today, and that number is growing by 2 to 3 per cent every year.
"now we need to look at their lives after treatment and make sure they live a healthy, normal life without cancer. we don’t want them to have heart disease or kidney problems as a result of cancer treatment instead."
Dr Koczwara is also a strong proponent of prevention and says the keys to cancer prevention are the keys to healthy life in general – stop smoking, lose weight, exercise, eat well and manage stress.
"I don’t fear cancer, though. The reason I don’t is because the fringe benefit of being an oncologist is you appreciate how wonderful it is to be alive," she says.
"I witness so many acts of courage and inspiration in my patients. It’s hard to be too self-absorbed.
"Cancer occurred in western society because we are older. In the old days we died of infection, disease or in childbirth. In a way, cancer is a part of our life."
Surgeon Dr Susan Neuhaus was there for Maddy at her lowest ebb.
As her treating surgeon, Assoc Prof Neuhaus, a specialist in treating sarcomas, helped Maddy find herself again through cancer.
"Sarcomas are not a single entity. they are a heterogenous group. Ultimately the rarer cancers do prove more difficult to find answers for as they are more challenging to research and get funds for.
"But each step leads to more knowledge," she says.
"I think that given how many millions of times our cells divide on a daily basis, it is staggering that there aren’t more cancers.
"Perhaps what’s most important is finding a way to provide quality of life to patients, rather than expecting a universal cure."
For her part, Maddy doesn’t know if the full impact of her diagnosis ever truly sank in."The thought that I might not get better was never a possibility to me," she says.
"I took it all one step at a time: get through the morning at home. then the drive in. A few hours at the hospital. then the drive home, and it was over for another day."
And the surgeries, the chemo, the radiotherapy … it was all worth it.
Maddy has been in remission since November 2010 but she is always aware that it is important that cancer research continues, and to know that others haven’t been so lucky.
Having struggled with chemotherapy – even refusing treatment one day because of the horrendous side-effects – Maddy was put in touch with another young sarcoma sufferer.
"she came to see me on one of my treatment days and just sat with me. I felt horrible, and didn’t talk much, but I listened while she told me about herself – where she was from, what music she liked, how she coped with treatment and, most importantly, that she knew what I was going through," Maddy says.
"she told me about how she had already been through once, and then was diagnosed with a second sarcoma. she had been through chemo for around a year, and there was no signs of slowing down for her.
"her story was heart-breaking, but she was one of the most positive people I have ever met. she spoke about everything so candidly, and she was so sympathetic towards me. she looked beautiful as well, even without her hair, and it was a huge inspiration to me – that she was still going through this, and not just going on with her life as usual, but helping others through it too.
"I only saw her one more time, at a group gathering, but she left a lasting impression with me, and I talk about her often.
"I got the news about four months after I got the all-clear that she had passed away, and it was a huge blow.
"I hardly knew her but she was one of the most amazing people I’ve met in my life, and played a big role in giving me strength to face the treatment because I knew that she was going through much worse with a smile on her face.
"I was invited to her memorial, which was down by the river.
"even though she didn’t know me well, I wanted people to know what an impact she has had on my life."
Cancer's new battlegrounds