Terminal and 22: How One Mole Changed Emma Betts’ Life

Emma Betts didn’t like the idea of a bucket list. Too much pressure, she thought. Instead, she wrote a list of things that she loved and which brought joy to her everyday life.

“Always have a bottle of champagne in the fridge,” her list dictated. “Always order pavlova if it’s on the menu.” Emma added a coda to the pavlova item: “Thank goodness it isn’t often on the menu or I would be living at the gym!”

Emma loved her life, her dog Ralph and her husband Serge Simic. Before she met Serge, she had loved her work as an aid worker in East Timor and the scuba diving she was able to do there.

It was in September 2012 when her dive master suggested she should get a mole on her back checked. Even when it turned out to be a melanoma, she remained eternally positive. She flew home to Brisbane to have the melanoma removed and, because it was only stage 1, didn’t give it much further thought. She was 21. Her life stretched out before her.

Emma returned to East Timor after the procedure with a wound near her right shoulder blade and about seven stitches.

She went to East Timor shortly after graduating high school and ended up writing programs for people with disabilities.

“She loved the country and she loved the people and she loved the aid work,” says her father, Leon Betts.

Emma in swimmers

In August 2013, nine months after the melanoma was removed, Emma felt a lump under her arm. Alarm bells started to ring. She returned to Brisbane where tests revealed melanoma had invaded her lymph glands. The situation had become far more serious; stage 3 melanoma was treatable, but things could go either way.

It was during a scan in October that year that her doctors found melanoma had already reached her liver. The deadliest form of skin cancer had well and truly invaded her system. Within a few months it was in her pancreas, lungs and spine.

The first round of treatment at Greenslopes Private Hospital failed. Emma was just 22 and her oncologist gave her just months to live.

They call melanoma Australia’s national cancer. New Zealand has the highest rates in the world with 50 cases per 100,000 people. Australia scoots in just below them. Someone dies of melanoma in Australia every six hours. That’s 14,000 deaths a year.

Emma thought it was an old person’s disease, but was shocked to learn that melanoma is the most common cancer in 15-39 year olds. If you are going to die of cancer between the years of 20 and 39 it will probably be from melanoma.

Emma in East Timor

A love story emerges: Together for ‘however long’

A woman smiles big while holding a brown puppy, sitting next to a man with a beard who is smiling

Her parents raised their three girls Ashlee, Sarah and Emma in the era of the ‘Slip Slop Slap’ commercials and had been careful to monitor the girls’ sun exposure. The whole family had their skin regularly checked. But growing up in and around Brisbane, sunburn was inevitable, and Emma, with her red hair, blue eyes and fair skin, was especially vulnerable.

Emma’s teenage years were dogged with ill health. She was diagnosed with reactive juvenile arthritis when she was 12 years old and had her large intestine removed when she was in her final year of school. It seemed to focus her in a desire to help others.

She joined the youth organisation, Oaktree, while still at high school, helping to fight poverty in third-world countries. At the end of her first year at university she was helping out in an orphanage in Guatemala. At the University of Queensland she completed a degree in International Relations and Peace and Conflict Study, an obvious pathway to overseas aid work.

But by 2014, all her altruistic ambitions had to make way for the effort of just trying to stay alive.

In a bittersweet irony, Emma had also just fallen in love. Serge Simic worked for Emma’s brother-in-law and soon the pair began talking on Skype when she was still in East Timor.

One of their first dates was in hospital as he sat by Emma’s side after surgery. Within five months, Serge had asked her to marry him. “It wasn’t out of pity, it was just like, ‘Hey, I genuinely want to be with this person’,” he recalls. “I was in it for the long run.”

But her oncologist was worried there might not be a long run. She suggested she bring the wedding forward, before Emma was too sick to be there.

Emma and Serge were married on the March 16, 2014 at Boomerang Farm on the Gold Coast. They changed the part about “till death do us part” to say simply “however long”.

But amid the happiness, the family knew that Emma’s time was limited. Her oncologist Dr Victoria Atkinson got her into a new medical trial hoping to buy Emma some more precious months with her husband and family.

A bride and groom in a park share a hug with their heads touching together

Emma ‘raising money to save other people’s lives’

Professor Richard Scolyer is a world-renowned melanoma pathologist working at Sydney’s Melanoma Institute. He was the first to diagnose Emma’s rogue mole.

Up until about seven or eight years ago, once melanoma had spread throughout the body, there weren’t any effective systemic therapies.

But with the development of targeted therapies and immunotherapy, patients are buying precious time.

“Immunotherapy basically reboots the body’s immune system to be able to recognise the tumour cells and start doing their job of killing off the tumour cells,” Professor Scolyer said.

Oncologist Dr Atkinson works at the coal face of the disease. “In the space of five to seven years, we’ve improved the survival for patients on average from nine months to as much as three years, and we have some patients who can get a complete response, so their cancer completely disappears.”

In fact, such are the hopes pinned on immunotherapy treatment that experts predict that, in the next 20 years, cancer will become a chronic disease rather than the death sentence that it often is. Plus, immunotherapy comes without the hair loss, nausea and nasty side effects of chemotherapy.

Emma started the trial in February 2014. “The response for Emma was pretty quick,” recalls father Leon. “The first couple of scans showed that her tumours in the main were actually shrinking in size and some had actually gone away.”

In June that year, Emma had begun chronicling her life with stage 4 melanoma in a blog she called Dear Melanoma. Sometimes, she would sit at her computer writing the blog and sobbing but the raw and vulnerable account of living with terminal cancer earned her tens of thousands of followers.

“It was warts and all; there was nothing she wouldn’t have a go at talking about and people just loved it,” Leon says.

Emma Betts blogging in hospital

The immunotherapy treatment had bought Emma Betts time. She and Serge travelled to the USA, Bali and toured parts of Australia. They bought an impossibly cute cavoodle puppy, Ralph. Craving the normality of a mortgage, they bought an apartment in the Brisbane suburb of Corinda. But most importantly, it gave her time to become a sun safety advocate and fundraiser for melanoma research. She was desperate to warn others about the biggest cancer killer of her generation.

She gave media interviews and talks at schools. She organised a fundraising ball and was often the top fundraiser in Australia for the Melanoma Institute of Australia’s Melanoma March.

“She wanted to raise money so there could be trials, but she wasn’t silly,” says Leon. “She knew pretty early in the piece that she wasn’t actually raising money for trials to save her life. She knew she was raising money to save other people’s lives.”

Emma had been on the trial for two years before it stopped working. In October 2016, Emma’s health began to decline. She was admitted to hospital in March 2017. And she kept looking at her bucket list. Only weeks before she died, friends and family gathered at her bedside and drank French champagne.

Emma Betts died on April 8, 2017. She was 25.

“If Emma’s story doesn’t make you go and get a skin check, I don’t know what will,” Leon says.

Melanoma March

Emma’s quasi bucket list:

  • To always have beautiful flowers in our home
  • To always order pavlova if it is on the menu at a restaurant
  • To have a fold-down (all cushions removed from my bed and the blankets turned down) by Serge every night (Serge is keeping up about 90 per cent of the time).
  • Enjoy Sushi Train often.
  • Always have a bottle of champagne in the fridge and drink from nice champagne flutes. This should not be limited to special occasions.
  • Eat Caramello Koalas when the urge strikes
  • Enjoy regular massages.
  • Make my English Breakfast Tea obsession extra special by drinking out of my favourite fine china teacup and saucer.
  • Buy cherries and eat them like they are going out of fashion.
  • Make having my hair dyed a six-weekly occurrence and always follow it with a blow dry, even when I am going straight to the gym after (yay for Hollywood hair!).
  • Always have beautiful nails (manicures and pedicures are never to be considered wasted money!).
  • Always have my favourite white wine on stock at home.
  • Remember that there is always time for weekends away.
  • Enjoy our new puppy, Mr Ralph.
    Pavlova loverSource