“I work in oncology research for a pharmaceutical company. When my sister was diagnosed with stage four cancer, my first thought was that I can use my knowledge to help and make a difference. But then I found out what it was really like to be on the other side. Having worked in clinical trials for 18 years, it was a completely different experience to be the sister of a cancer patient, trying to help her understand what was happening. We all just completely underestimated what it meant for her cancer to be rare.”
When Rachel’s sister Danielle went to the GP with back pain in March 2021, she assumed it was from poor posture at her laptop, perhaps she’d pinched nerve? It was in fact from lesions on her spine, which were metastases from Medullary Thyroid Cancer.
“I don’t think Danielle heard anything beyond, ‘You’ve got cancer’. You could see that in the room. She just stared ahead blankly. For her, it was a case of: I’ve got cancer, how long do I have left with my kids? They were the only two things she was able to concentrate on,” remembers Rachel.
Following surgery to remove the primary cancer, Danielle had to wait over three months to access the preferred treatment through a compassionate access program. The drug was not available on the PBS for her type of cancer.
“Dan had to wait months for her first treatment. The fear and anguish she went through during that time was a big part of her journey. And it was very much related to the fact that her cancer was rare. The research, the options – they’re just not the same for rare as they are for more common cancers. Not knowing what the cancer was doing inside her body and living with incredible pain from the metastases – it was awful,” Rachel reflected.
While she was waiting, Danielle started on an alternate treatment that was very hard to tolerate. She also underwent genomic testing to see if she could qualify for a clinical trial but was not accepted. After finally gaining access to the treatment she needed, things seemed to be going well; until around October, when she discovered the cancer had spread to her lungs.
“By late November we got to the point where she was in a hell of a lot of pain because of issues with her back, and then her lungs. By early December she’d made the decision to stop treatment. From there it was just a matter of time. She eventually passed away on 21st December, just a few days before Christmas,” recalls her husband, Rob.
Some two months later, Rob and Rachel are reflecting on the harsh reality of a rare cancer diagnosis.
“For the first time I got to see what it felt like being on the other side. The fact she was offered a clinical trial straight away – which I thought was great – was really because there weren’t any other options for her type of cancer. All that waiting to see if she was eligible. Trying to understand a 20-page document on informed consent. I’ve spent my career in this field, but I remember sitting in the doctor’s office with her and thinking – how can everyday people possibly understand what is being said to them? Rob and I made copious notes between us, we’d share them afterwards and between my knowledge and the internet, we’d try to decipher what they meant,” Rachel remembers.
It was at this stage that the pair reached out to the Specialist Cancer Navigators at Rare Cancers Australia.
“RCA stepped in and were able to explain some of the things that were being said. We could go to them as a second set of ears when you didn’t understand something. They could explain it again, whereas you only get that one shot with the clinicians and then they’re onto the next patient.”
“RCA knew exactly what the plan was, what the options were, the language that was being used. They helped us decipher it. They helped us understand the thought processes and motivations of Dan’s specialist, which was invaluable. They helped us think outside the box and offer alternatives that we could take to him. That was a huge, huge help,” recalls Rob.
“For those who are left behind and working through the grieving process, you look back on all the decisions you made, and you question yourself. Did we take a step back when we should have taken a step forward? Having someone like Rare Cancers there meant we could talk through the plan for Danielle and take their advice on everything we could possibly try. It’s so important for any carer or family member to come out the other end knowing you did everything you possibly could,” said Rob.
The pair remember the hope inspired in Danielle by the story of RCA co-founder, Kate Vines.
“I remember Dan calling me – and the relief in her voice when she spoke about Kate who had survived for decades with the same type of cancer as her. Up until that point she was just incredibly scared, mainly of having to leave her girls. But here she was talking to a living, breathing example of what was possible. That didn’t end up being Danielle’s story, but the comfort it gave her, and the hope to keep going, to keep trying – that was huge.”
Both agree that the value of genuine emotional support cannot be measured.
“Dan would go from appointment to appointment, and sometimes Rob would be reminding them about tests she’d already had done, or result they’d already received. It felt a little impersonal sometimes which is really hard to take when you have a terminal disease. You want to be the most important person in the room. RCA remembered everything about Dan. It was this personal, genuine empathy and care when sometimes you just feel like a number. Not through any fault of the doctors, they’ve got millions of patients and they’re trying to save them all, and they have to move onto the next appointment. But RCA just felt very generous with their time and would proactively reach out which made Danielle feel special when she really needed to feel special. You can’t beat that,” said Rachel.
“I can list 10 or 15 things that Rare Cancers did to support us, but the number one thing, the most important thing, was just being there when we needed them. Most of the time I didn’t even realise I needed the support. But they would reach out with a text or an email and ask me how things were going, how I was coping, can they help in any way. Instantly 10 things would jump into my head, and I’d fire it back to them. That afternoon they’d ring me with answers to 9 of my 10 questions and were waiting for a response on the last one. Then they’d sit there and talk to me for half an hour, an hour, whatever it took, just to let me unload. And that was probably more valuable than the technical stuff. They helped us access drugs, gave us alternative approaches to investigate with our specialists, told us how to go about genetic profiling. But just being able to talk to someone who’d been there, who understood, who knew what the issues were, what the processes were – for me, that was the most important thing, more than anything,” said Rob.
Climbing Kosi in honour of Danielle
On 19 March, the pair plan to climb Mount Kosciuszko as part of the Kosi Challenge: Rare Cancers Australia’s biggest annual fundraising event.
“Danielle would have turned 47 the week before Kosi. For me, it’s another way to help honour her and celebrate her birthday. There’s eight of us in total, including our children. Danielle’s mum and dad are joining virtually. And I’ve got 10 friends in the UK who are going out for a walk on Saturday in solidarity with us,” said Rob.
For Rachel, the Kosi Challenge has come at the perfect time.
“It’s given me something to focus on so soon after we lost Dan. It’s got Rob and I out of our houses, we are walking in preparation, and we end up having a bit of a therapy session together. It’s helping me grieve because I feel like I’m still doing something for Dan. That’s the main reason we’re climbing – we don’t want to lose sight of how important she is to us, and how thankful we are for everything RCA has done.”
