“I have always been an active, healthy person and I have always just loved life,” says 35-year-old, Byron Bay local, Natalie Willacy.
So, when she was diagnosed with an extremely rare and aggressive form of cancer in February last year, she felt completely blindsided.
“I had no symptoms until a week before I was diagnosed,” she continues.
“And even then, they were general, consisting of back and flank pain and swelling in my limbs and abdomen.
“But my instinct was telling me that something wasn’t right and to see a doctor – I saw three as it turned out.
“All three doctors dismissed my symptoms as exhaustion, constipation or dehydration. I kept insisting it was more than that and in my third appointment I was finally referred for an ultrasound.”
Two days later Natalie received a phone call from her doctor with the results, telling her she needed to immediately go to hospital at the Gold Coast for further testing.
“I wasn’t told why I had to go, just that I needed to straight away. So, I did. I jumped in my car and drove to Emergency that night.
“I had no idea what to expect, but it certainly wasn’t cancer.
“I recall a specialist at the hospital sitting me down and saying that they found ‘a 14-centimetre mass’ and I nervously chuckled and said, ‘well at least it’s not cancer’ and he was like ‘oh no, it is cancer’.
“The time following that conversation is a blur, I was sent for a biopsy which turned out to be quite traumatic and the results were inconclusive. I was sent home with a piece of paper and zero explanation or indication of what kind of cancer I was dealing with.
“I ended up taking a photo of my discharge papers and sending it to a friend of mine who works in the medical field. She messaged me straight back saying ‘it’s in your lungs; you need to get on to this quickly!’.”
With the public hospital not able to provide Natalie with an appointment to see an oncologist for six weeks, she took things into her own hands. She reached out to her own network of support to try find faster access to oncologist and treatment plan and luckily, the mother of a good friend of hers was a Registered Nurse at Icon Cancer Centre.
“I was luckily able to get an appointment at Icon Cancer Centre within a few days. It meant driving back up to Brisbane, but I jumped at the chance and headed straight up there with my mum,” Natalie recalls.
“The treatment team there was amazing. They sent me for PET scans, CT scans and other tests and referred me into a doctor at the Royal Brisbane Women’s Hospital straight away.
“It was at the hospital that I got the news that I had an extremely rare form of cancer called adrenocortical carcinoma and my own oncologist had never even heard of it! In addition to that, the tumour had grown to 17 centimetres, and it was just millimetres away from my heart, and too dangerous to operate on.
“They then told me that if I made it through the night, that I would start chemotherapy the next day.
“It’s scary reflecting on this moment, because if I had not trusted my instinct, and waited those six weeks to see a public hospital doctor like my discharge papers stated, then I wouldn’t be here today.
“In hindsight I’ve come to the realisation that my quick thinking and quick actions saved my life, because you don’t have time to sit around and wait when you get diagnosed with a rare cancer.”
Natalie made it through the night and started her chemo the next day and didn’t leave the hospital for the month to follow.
The chemotherapy took its toll on Natalie with awful side effects. Her treating team got on to looking into alternative treatment options for Natalie through genomic testing and struck gold when results came back for her being a match for a form of immunotherapy called Pembrolizumab, also known as Keytruda.
A major hurdle however was that Keytruda is not listed for public access on the Pharmaceutical Benefits Scheme (PBS) and came with a hefty price tag of $8,000 per treatment.
“I was told I needed one round of the immunotherapy every six weeks, each costing $8,000 and requiring me to commute between Byron and Brisbane,” says Natalie.
“I couldn’t continue the chemo with the side effects I was experiencing and I felt hopeful about the immunotherapy option, so I decided to do it, regardless of the financial impact it would have on me.
“I started the Keytruda in April 2024, in conjunction with oral chemo, and by August my tumour had reduced to a size safe enough to operate on and successfully remove. I honestly feel like while the chemo kept me alive initially, but it was the Keytruda that shrunk my tumour enabling me to have it removed and ultimately survive,” says Natalie.
After a long and difficult post-op recovery, Natalie finally made it home to Byron Bay in November and she has been doing well adjusting back to a new normal way of life.
After a break in treatment over the Christmas period, she has recently restarted the Keytruda immunotherapy, after a PET scan showed the cancer had spread further through her lungs.
“My oncologist would like for me to remain on this course of treatment for a full two-year cycle, which is going to be expensive but what choice do I have? I’m lucky that I’m single, I don’t have a family to feed, I don’t have a mortgage and I’ve been able to access my superannuation. But what about other people living with a rare cancer and needing access to this treatment who can’t afford it? What about them?” Natalie states.
“If my cancer was in the breast or lung, I would have been able to access it on the PBS. But because it’s rare, it’s not covered, and I’ve had to pay out of my own pocket.”
Through Rare Cancers Australia, Natalie has been able to connect with another person, Ellie, who has her rare form of cancer and incredibly lives in Brisbane. The rare pair have met a couple of times and Ellie will be joining Natalie later this month with other friends and family to mark the one year since her diagnosis.
“We are going to party hard and just celebrate the fact that I’m here against all of the odds,” she says with a smile.
“I have a new perspective on life now and the most valuable thing in the world to me now is time. Time with the people I love, doing the things I love, and living my life to the fullest.”