'I thought, wow this is it': The unexpected event that led to mum's incurable cancer diagnosis

Val, Peter and their daughters went to Paris earlier than planned and say it's important to enjoy life as a family. Photo / Carswell family.

Val Carswell remembers the exact moment she was told she was going to die.

It was down the phone from a train in Japan where her doctor was travelling while on holiday.

Val, who had already been diagnosed with breast cancer, had just received the results back from a biopsy.

The biopsy, taken from her chest wall, showed the cancer there had a different DNA from the cancer in her breast and lymph nodes.

Discovered by chance after an accident, the appearance of this cancer in her chest with the contrasting profile was bad news to Val's holidaying oncologist.

"I'd got hold of her in Japan and I remember her saying, 'It sounds like you now have a significantly reduced life expectancy'," Val told news.com.au.

"I remember thinking, 'Wow, this is it'.

"I remember thinking, 'Will I see my girls grow up?'

"When someone tells you that you have cancer, you do feel very vulnerable about your mortality.

"It was a very sombre drive home."

Val is 48 years old, from Lilydale in Melbourne, and with her fireman husband Peter has three daughters, Charlotte, 16, Amelia, 14, and Sophie, 12.

She was diagnosed with cancer in February, 2017 and found out by July she had metastatic cancer — cancer that has spread from the primary site of origin to new areas of the body.

In the past, metastatic or stage four cancer was basically a death sentence — rounds of horrible chemotherapy, radiation and then preparing to die.

But Val's oncologist had different ideas for her, namely a drug called Kisqali which had been used to treat women with advanced stage breast cancer, news.com.au reported.

Taken in conjunction with another drug, it has some unpleasant side effects, Val learned.

Her response was, typically for Val, laced with black humour: "I always say, better that than dead."

Val is one of three women with metastatic cancer on the Kisqali drug protocol who spoke with news.com.au about living with advanced cancer.

Kisqali inhibits something in the cancer cell cycle to halt growth.

Val's story is very different from the general public perception of breast cancer, including that it's curable via the Angelina Jolie route of having breasts removed and it's hereditary.

Many women with advanced stage breast cancer have no family history of the disease, and metastatic cancer is incurable.

It affects up to one third of the 20,000 breast cancer diagnoses in Australia each year.

As Val says, "I'm convinced it will get me eventually", but she is determined to live her life and for many more years.

Val's story began mildly enough when she found a pea-sized lump in her breast.

Val's black humour has kept her going after a diagnosis that initially made her think 'this is it'. Photo / Carswell family

"The doctors said 'it's probably nothing', and it didn't feel very sinister," she said.

A mammogram showed nothing, but Val was to learn scans were more useful for younger women who have denser breast tissue.

An ultrasound showed an abnormality that proved to be an "architectural distortion".

Val couldn't help googling it and found it was one of the biggest indicators of breast cancer.

"But I was trying to keep a lid on it," she said.

A breast surgeon told Val: "It doesn't look like cancer and I know what cancer looks like."

But within little more than a week, her life changed.

An ultrasound on a Friday, GP on the following Monday, breast surgeon on Wednesday, biopsy on Thursday, 46th birthday on Sunday, and results back on Monday turned it upside down.

"It was an invasive ductal carcinoma and I was booked in for surgery that Thursday," she said.

"They took out the lump and got clear margins. It all looked good.

"They took out the sentinel lymph nodes and it looked good, and then I went and saw her (the breast surgeon) a week later.

"The nodes showed the cancer had spread to two of them.

"That's when you get chemo.

"I just kept on surprising everyone … 'oh it's nothing … oh it's spread', the gift that kept on giving," Val said, with a laugh.

"That's when we told the children."

Val had to undergo more surgery, standard practice to remove all lymph nodes.

It was late March and she had a date in Queensland, her niece's wedding, for which she wanted the one thing chemotherapy couldn't give you: hair.

"That was my negotiation. When I went to the wedding, I still had my hair," she said.

When she returned, Val started chemo and over three months, every three weeks she would have four sessions in a week.

That got rid of her hair, and after each week of sessions, she would be nauseated for days.

She began taking the oral chemotherapy drug Taxol, but Val would continue to surprise people.

"I'm not a good story for normality," she said.

Val was breathless and struggling with other symptoms, and the doctors told her that was normal.

But a test revealed she had a resting heart rate of 180 beats a minute. Normal is between 60 and 100.

Val was having a very rare reaction to the chemo, congestive heart failure, and she spent a month in hospital and then underwent rehabilitation.

By then it was November, time to have six weeks of radiation, every day.

"That was the worst," she said, "Fifteen minutes a day, every day.

"It makes you tired and of course towards the end I did get burns, although I've seen photos of breast cancer patients with shocking burns.

"But the tedium and when you have three kids doing tennis and netball.

"It was like, 'Can I miss this session', and they'd look at me like, 'Are you stupid?'"

Val also reacted to one of the antibiotics by going into anaphylactic shock and almost dying.

Val, Peter and their daughters went to Paris earlier than planned and say it's important to enjoy life as a family. Photo / Carswell family.

She developed a blood clot in her jugular vein and was placed on blood thinners.

Val's family had adjusted to her cancer odyssey.

But when they had to cancel their regular Bali holiday, there was a moment Val says when one of her daughters reasoned: Couldn't they just go without Val?

In January last year, the family went to Queensland instead.

The day that would begin with a ride on the Road Runner rollercoaster at Movie World would end with Val's phone call to Japan and the sombre drive home.

The rollercoaster stopped suddenly mid-ride, causing Val's body to crash into the carriage.

In agonising pain and a fear she had broken her ribs she was rushed to hospital for a CT scan that "just took forever".

Waiting with one niece, she was texting another niece about the evening's seafood banquet dinner.

Eventually, a doctor came up to Val with the "good news, you've got no broken ribs".

"But the bad news was I had cancer in my chest wall," Val said.

The phone call to Japan was made, another scan was taken and Val had metastatic, stage four breast cancer.

In February last year she was placed on Kisqali, a drug so new it was not on the Pharmaceutical Benefits Scheme (PBS) and would cost $6000 a year.

Val qualified to be put on a special access scheme and began taking it, experiencing significant gastrointestinal side effects.

"The next scan was three months later. That was big," Val said.

The cancer hadn't spread and Kisqali's job was to keep the existing tumours in check and not growing.

Her oncologist's job was to keep metastatic cancer in perspective.

"I love (the doctor) because she's more about how can we just keep prolonging life," Val said.

"Let's just treat it like a chronic condition, like MS.

"It's not about, 'Oh my goodness this is it'.

"There's another lady who has had metastatic cancer for 15 to 20 years.

"You keep on keeping on.

"(Someone said) it's like staying up in a holding pattern, up in the air and praying that you don't run out of fuel.

"I hope to stay in a holding pattern until a new drug comes around.

"The problem with any cancer is you don't know how long the drugs work until they stop working."

Val knows two school mothers with breast cancer, one who is "not good".

"Sometimes I feel guilty," she said.

"I don't expect to be saying goodbye, but I know it's in my kids' minds.

"(My youngest daughter) Sophie said we were not going to get to Paris for her 18th birthday.

"So we took her.

"My husband's even changed things. He used to work and didn't have time to relax.

"Now he goes to the footy."
Val left her job as a teacher and now concentrates on her family and travelling as much as possible.

"How do you cope?" she said.

"I laugh. You can't worry. You do only have one life.

"My (eldest) daughter's formal is on Friday. Will I get to see weddings, children?

"You never know what's around the corner."