“I was so young, and I just assumed that when you get sick, people help you to get better, right? It was hard to understand that it doesn’t work like that.”
At the age of 10, Year 4 student Angus noticed a large lump in his neck. After blood teststesting done to measure the levels of certain substances in the blood and ultrasounds suggested there was nothing to worry about, his GP pushed for the removal of a lymph nodea small lump or mass of tissue in your body for testing.
It was Hodgkin’s Lymphomacancers of the lymphatic system.
“As a kid I actually thought the lump was cool. But my parents knew it wasn’t normal. I remember the oncologista doctor who specialises in the study, diagnosis and treatment of cancer coming out from behind a door, and then all I heard was white noise. I sat there and zoned out. He said it was ‘cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs,’ but I didn’t know what that meant; I didn’t know what I was. Mum and dad were crying though, so I knew it wasn’t good.”
After two months of painful chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells, Angus was given the all clear and resumed life as a fit and active brother of three.
Nearly two years later, more lumps appeared in Angus’ neck. He was one of the very few children in whom Hodgkin’s Lymphoma recurs.
“The first time they told me I had cancer, they used words like ‘common’ and ‘curable’. They reassured us that the treatment had a ‘very high success rate’. But when it came back, it was a very different experience. The room was dark. I was scared. And then I saw the look on Dad’s face. I felt like such a burden. Your parents are sad, and they’re looking at me, so it feels like my fault.”
The first lot of treatment, brentuximab vedotin was effective, but there were only two rounds of that on his protocol. The high dosethe amount of medication taken combination chemotherapy that came next was ineffective, and the cancer continued to grow. Next came radiotherapy to his neck and chest every day for 21 days. After the radiotherapy came an autologous stem cell transplanta procedure that involves replacing unhealthy blood-forming cells (stem cells) with healthy stem cells. For Angus that meant 30 days in isolation in hospital, and another 21 days at home in isolation.
“It was a very lonely time. I felt very excluded. My best friends were finding other best friends and going away on school camps. It was sad to see everyone living normal lives, and I was in a hospital room all the time. I didn’t want to tell my mum and dad, I felt bad already because I knew they were struggling.”
The post treatment scan revealed no active cancer, however after one relapsethe return of disease his parents knew that the recurrenceto occur or happen again rate was in the order of 40-50%. Research also suggested that not responding to treatment – as occurred with the high dose combination chemotherapy in Angus’ first relapse – increases the riskthe possibility that something bad will happen of recurrence. They knew that the next time, treatment would be more aggressive, more dangerous and less effective.
“At 12 years old I didn’t know the extent of how serious it all was. I only found out a couple of years ago how life threatening my cancer was. I’m glad I didn’t know – it’s such a big thing to deal with when you’re that young. I guess my parents just told me what I needed to know.”
Research suggested that the use of brentuximab as a post-transplant therapy reduced the risk of relapse by 50%. However this drug, though approved for some patients, was not available to relapsed Hodgkin’s Lymphoma patients though the PBS.
Angus needed 16 doses administered once every three weeks, which usually costs around $11,000 per dose.
“If we couldn’t raise the money, there was no Plan B. Maybe they would have re-mortgaged the house and gone into debt. Or I’d have to try a treatment with more risks and side effects.”
“I was so young, and I just assumed that when you get sick, people help you to get better, right? It was hard to understand that it doesn’t work like that.”
Angus’ family reached out to RCA for help, and his story appeared on A Current Affair. Thanks to generous donations from the public, Angus’s family had enough money to pay for the treatment.
“Four kids from my primary school lost a parent to a rare cancer. My best mate’s dad had to go to Germany because he couldn’t access treatment in Australia, and he ended up passing away while I was in treatment. It hit me a lot now that I’m older. It makes me angry that someone can dictate to you whether or not you get treatment, like my mate’s dad. How can that happen? Why is he not worth it? Why is it all so political and why is no one listening to the people? It’s easy to feel disillusioned.”
Now 19 years old and studying at university, Angus wants to give back to the community that supported him all those years ago. He hopes that by sharing his experience, he can raise awareness of the challenges rare cancer patients face and provide hope for other young people walking a similar path.
“Going back for check-ups is really triggering. I get lots of PTSD from it, lots of guilt. But I want other young people to know that there is hope. That’s how I was able to survive – I was surrounded by hope. Mindset is everything, and a positive attitude – holding onto hope that this is all just temporary and you will come out the other side. You may miss out on things now, but you have a whole life ahead of you, and a future to look forward to.”
“I want to use my experience to help people. I’ve been helped by so many people in my life, and I’d love to give that back.”
Angus joined RCA at CanForum 2022 to help us launch our “Counting the Cost” report, which seeks to change how policy makers put a value on the lives of those living with cancer. Hear Angus talk about his thoughts on the ‘value of a life’ in Australia.