Lauren Rae received a terminal diagnosis from Auckland Hospital in early January. Photo / Getty Images
"I'm in the fight of my life."
Lauren Rae (nee Roberts) confronted New Zealand's deadly record of treating melanoma, and refused to accept her prognosis.
The 2014 Commonwealth Games weightlifter and former surf-lifesaving competitor has been forced to uproot her life, her family, including two young children, and live in Airbnb accommodation in Australia as rentals require proof of income – just to give herself a fighting chance.
Muriwai born-and-raised Rae received a terminal diagnosis from Auckland Hospital in early January for a rare non-sun related melanoma which contained a gene called BRAF v600e.
A fit 36-year-old woman, her outlook and treatment options were bleak.
Despite having the melanoma surgically removed Rae was told the cancer cells had spread to her lymph nodes, and that should she decide to join the clinical trial at Auckland Hospital, the doctors were unsure it would be of any use.
The kicker was being told her data would be used to help treat future patients.
"That gave me the shivers," Rae recalls. "It just shows how new some of these treatments are and that there is still a large unknown about melanoma, particularly with a rare cases like mine."
Staring mortality in the face, Rae questioned her diagnosis. She chose to fight, seeking second and third opinions that eventually opened the door to hope and led her family to going all in on Australia.
Within a week of speaking to her Brisbane oncologist, the Rae family packed and rented out their house; sold their car, took leave without pay and told their children, 3 and 5-years-old, they were off on holiday.
Such is the uncharted nature of this journey, Rae's kids recently started school and day care.
Rae can't predict where her story leads but she hopes other melanoma patients in New Zealand will read her dogged tale and search beyond their initial diagnosis, too.
"I would hate for someone to go through what I've been through," she says.
"The first option isn't always the right option. In any medical treatment you have to piece it together yourself. It's so important that you are your own health advocate in these situations, especially with rare melanomas like mine some specialists have never seen it before. For me it was about searching out that specialist who had seen some positive results. And I feel like I have hit the jackpot with my team in Brisbane. They have the data and the experience. I'm just relieved I didn't give up.
"I'm fortunate I found the right path and I put that down to having the support network behind me, but I'm sure there are people out there who haven't questioned things; didn't get that third and fourth opinion. While there are many factors as to why people wouldn't question a diagnosis, for me it's been potentially lifesaving."
Rae, husband Dan and their children have spent the past three months in Brisbane while she undergoes year-long treatment of Dabrafenib and Tametinib – an oral medication taken morning and night that filters through the bloodstream.
Side effects are reduced compared to chemotherapy and radiation, which Rae was told don't work for melanoma, but she is suffering through 40-degree fevers and fatigue.
The treatment plan involves 12 months of medication, with anxiety-inducing scans every three months to check it is working. Early data suggests patients respond relatively well while on the drugs but melanoma is a nasty illness that can return.
Rae says the medication she is taking has close to a 60 per cent survival rate at five years. If that fails, she can revert to an infusion alternative with a slightly reduced survival projection.
Comprehending those odds, while grappling with emotions from her initial diagnosis, form a complex daily psychological battle.
With every ounce of willpower, she visualises a future with her family.
"You sit there and think you've got an almost 60 per cent chance of coming out of this, it's definitely a mental game.
"It's that continual fight. One foot in front of the other. I draw on my kids a lot in this situation. They're almost willing you to continue with life. It's not just how I can prepare my body to fight this. The fear that comes with this is it can either become overwhelming and cripple you or you can run with it and live life. That fear can either be death or life.
"My kids have no fears in terms of what I'm dealing with. You don't know how resilient your kids are until you're in a situation like this and they just adapt.
"It comes in ebbs and flows. It's about finding that courage and continuing to walk forward. Life needs to continue regardless of what the outcome is here.
"I have fear for my life, but at the same time I try to calm my mind and say you're doing everything you can."
New Zealand had the highest melanoma death rate in the world in 2020, with over 350 people dying every year. Yet treatment options continue to languish. Exorbitant fees are another major barrier. Rae's treatment costs $80 per month in Australia compared with $5000 in New Zealand.
"It's been a huge awakening for me. It just doesn't seem fair. Australia has come on board with the fact melanoma is a huge issue. In New Zealand I would have needed support from my family or to remortgage my house. It's very sad.
"If I received this diagnosis in 2017, I would literally have been sent home and told there's nothing available to you. While I was frustrated with the system in New Zealand it comes down to who is funding these trials and drugs. And, unfortunately in my case, Australia was ahead of the game. I feel very grateful I am able to be here in Brisbane with the team I have, receiving treatment.
"Melanoma needs a focus in New Zealand. I've had to search out someone who has completed a clinical trial and has data that is specific to my type of cancer."
The type of treatment Rae is receiving has only been in place for five years. Her oncologist is still collating data in order to publish it at a later date but that information is yet to filter through to other countries or hospitals.
Prior to the Covid-19 pandemic, patients flew back and forth to Rae's oncologist from New Zealand because the treatment is government-funded in Australia, Kiwis can access it, and the clinical trials there are more advanced than New Zealand.
"It's sad New Zealand isn't there yet for something that can be so deadly."
Before leaving for Australia, Rae had a visit from her former weightlifting coach, dual gold and silver Commonwealth Games medallist Richie Patterson, who suggested she had prepared herself for this battle her entire life.
"He said 'you've shown up in training ready to suffer and put your body through pain in order to get to a goal. This is no different.' That really resonated with me.
"Anyone with a sporting background or the determination to win in life or competition, I'm one of the people that is best suited to this situation because of the mental capacity and the desire to keep pushing.
"I know I'm in the fight of my life here. My sporting career plays a huge role in that mental game for me right now.
"I never thought in my wildest dreams with my surf lifesaving sporting background I would be going to the Commonwealth Games. It was an incredible experience and helped fuel the competitive nature in me.
"Life is a competition. You're either going full noise to try and win or you're going to take a backseat."
If only Rae and others could fight for their lives at home.
'I’ll be playing the true team manager job and putting the pressure on.'