When Ana Ratapu was diagnosed with melanoma, she had to fight hard to get life-saving treatment. Now, as a member of Melanoma and Skin Cancer Trials Consumer Advisory Panel, Ana is working to remove those barriers and ensure those in need can access the highest standards of care.
In 2020, Ana and her family were caravanning around her second home of Australia. Having lived in Perth for five years, the New Zealanders decided it was time to see all that Australia had to offer. They were four months into their adventures and sightseeing when Ana noticed a less than welcome sight – a red spot on her neck.
Having lost several family members to melanoma, Ana didn’t take any chances. She immediately made a detour to have it biopsied, which confirmed that the innocuous looking spot was a melanoma.
“I was so grateful I didn’t put it off because it didn’t look like a traditional melanoma or because I was on holiday. My story would be a very different one if I didn’t trust my gut. I was able to have it surgically removed while still in Australia and, while the doctors were fairly confident they’d got it all, they recommended I have regular scans just to be safe,” Ana said.
PODCAST EXCLUSIVE TO THE ONCOLOGY NETWORK | LISTEN NOW
With borders closing, it was time to return home
This was all happening against the backdrop of the COVID-19 pandemic and countries had begun closing their borders. So, with her surgery completed, Ana and her family decided to return to New Zealand.
Back home, Ana found herself needing to self-advocate to get the scans recommended for her in Australia. Facing lengthy delays for imaging testing, she consulted a private oncologist who suggested biannual scans.
“I worked as a skin cancer nurse, so I knew a fair bit more than your average person going through it – but even I found it overwhelming and frustrating. Even after I went private to get the scans done, they couldn’t detect smaller growths. I just knew it was spreading and growing, but essentially I had to wait until the melanoma was large enough to be picked up on the scan. It was horrifying.”
Leaving her family to join a life-saving clinical trial
18 months after her initial surgery in Australia, Ana received the news she’d been dreading. The melanoma had indeed spread and was now in her lungs. With the clock ticking and limited treatment options available in New Zealand, Ana made the decision that would save her life: return to Australia and join a clinical trial.
“It all happened so fast – it was a real roller coaster of emotions. From the anger of knowing I wouldn’t have had any scans in the New Zealand public system, to relief at finding a suitable trial, to the sadness of leaving my husband and two young kids. I didn’t really have time to process it all – I just knew I had to get on that plane and do anything to survive for my family.”
Within weeks of arriving, Ana was receiving cutting-edge immunotherapy treatment through the trial. Fortunately, she responded well, and her scans began showing a reduction in tumours. But while the trial was yielding positive results, being away from her family brought its own challenges.
“The trial is for two years, ending May 2024, which is a long time to be away from the people you love. So, when I realised I actually had a good chance of surviving this, we made the call to relocate the family to Australia. That was a huge step, because until then part of me wasn’t sure I’d make it. It was an emotional reunion.”
Helping others through advocacy work
With her latest scans showing no sign of the tumours that once riddled her lungs, Ana is hopeful she’s in the clear. But she knows others won’t be so lucky – particularly if they’re unable to readily access regular scans or join a clinical trial.
“I want to make a difference; to share my experience so that others know what to expect and how to fight for the best outcomes possible. So, when the opportunity to join the Melanoma and Skin Cancer Trials Consumer Advisory Panel presented itself, I leapt at it. It sounds cliched but I feel like this was all meant to happen – that everything I’ve been through has led me here and now I can’t wait to play a part in giving people access to clinical trials like the one that saved my life.”
“As a young patient, I want to show others like me that there’s always hope – you just need to know where to turn. And in this new role, I intend to make those support pathways as clear and simple as possible for people.”
Sharing her journey at the 2024 Annual Scientific Meeting
Ana will share her unique observations of her lived melanoma experience and the skills learnt as a clinical nurse caring for melanoma and breast cancer patients at the Melanoma and Skin Cancer Trials Annual Scientific Meeting on 24 October 2024 in Sydney. Learn more and register here.
Source: MASC
