Karen Thrussell was 49 when she started experiencing hot flushes, fatigue and weight gain.
The Victorian mother put it down to menopause — she was in the right age category, after all.
However, further tests revealed Thrussell was actually harbouring something more sinister within her body — a 7.5kg tumour in her abdominal cavity.
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She was diagnosed with sarcoma, a rare type of cancer that makes up only 1 per cent of all adult cancers in Australia and New Zealand.
Thrussell is now raising awareness for sarcoma, which is often misdiagnosed, and says it is important for it to enter public awareness just as prostate and breast cancer have.
“I just think it’s about people understanding that these sorts of cancers exist,” she told 7NEWS.com.au
Noticing something wasn’t quite right
Thrussell, from Surrey Hills, was a working mother with two daughters when she started feeling unwell in 2017.
Alongside fatigue and weight gain, the now 55-year-old said she also experienced a “pushing down feeling” similar to when a woman is pregnant and the baby gets heavier.
“I thought maybe I had some kind of prolapse,” she said.
Thrussell underwent a host of tests, from colonoscopies to breast screenings.
It was only when she had an ultrasound that something popped up.
“It was one of those horrible situations where they’re doing all their scanning but they won’t tell you anything, bringing doctors in and out … you’re there and you don’t know what’s going on,” Thrussell said.
“And then they finally said, ‘We found something but we don’t know what it is and it’s around your kidney’.”
The mass was eventually revealed to be liposarcoma, a type of soft tissue sarcoma that develops in fatty tissue.
Thrussell was told it had slowly been growing in her abdominal cavity for 10 years.
Unlike other cancers, the mass was not solid but rather “really soft and squishy”, Thrussell said.
“In your abdominal cavity, you’ve got quite a lot of … space around your organs, and so it just kind of filled up around the organs and just became this mass of squishy jelly,” she said.
“My stomach wasn’t hard to touch so it honestly just felt like weight gain.”
The diagnosis was a complete shock for the Melbourne mother, particularly as she had never even heard of sarcoma before.
“You’re immediately like ‘Is this something you die from? What’s this sarcoma?’,” Thrussell said.
What is sarcoma?
While it only makes up 1 per cent of all adult cancers, sarcoma is more common in children — accounting for about 20 per cent of childhood cancers.
There are more than 80 different subtypes of sarcoma and tumours can form anywhere in the body.
Australian and New Zealand Sarcoma Association director Dr Jason Caine said it is unclear what specifically causes sarcoma.
“For instance, if I use lung (cancer) as an example, if you’ve been smoking all your life then you’ve got a higher chance of developing lung cancer,” he told 7NEWS.com.au.
“And if you’re exposed to UV, melanoma is a cancer risk for you.
“There’s nothing really that we can identify as being high risk for a sarcoma patient.”
Caine said there were two main reasons sarcoma is often misdiagnosed.
Symptoms are normally quite common and can be put down to other, more benign, conditions such as growing pains in teenagers and children or, like in Thrussell’s case, menopause.
Being such a rare cancer, front-line medical professionals such as GPs also may not consider the disease in patients presenting with such seemingly generic symptoms.
“It’s not something they would commonly see in their clinics so it might not necessarily be the first thing they consider in certain circumstances,” Caine said.
The average five-year survival rate for sarcoma is about 70 per cent, he said.
For Thrussell, having to tell her children about her diagnosis and reassure them everything would be OK while trying to deal with the news herself was difficult.
“It’s horrible,” she said.
“Everybody is so upset and you’re dealing with other people’s grief, not just your own.
“It’s a really bizarre thing to have to cope with your own ‘Oh my god’ and everybody else is like ‘What’s going to happen?’.”
A mammoth surgery reveals a mammoth tumour
Thrussell underwent radiation for eight weeks before she was booked in for surgery in 2018.
She was under the knife for 10-and-a-half hours, with doctors removing a 7.5kg tumour.
“That’s like two babies,” Thrussell said.
Some lymph glands, a section of her bowel and one of her kidneys were also removed
“(The doctors) hadn’t said that beforehand so that made me really sad,” she said.
“But they said the sarcoma had wrapped itself around and the kidney they took out was effectively not actually working anyway.”
Thrussell’s tumour was so rare it was sent to a research lab in America.
She said it took her about three months to physically recover, and 12 months of mental trauma — including the fear the cancer would return.
“There’s no guarantee,” Thrussell said.
“I’ll be scanned for the rest of my life.
“Every scan you have obviously starts to decrease the return rate.”
Thrussell has been cancer-free for six years.
With July being Sarcoma Awareness Month, Thrussell said it was important to spread the word about the rare cancer — and give others diagnosed with the disease the comfort that they are not alone.
Listening to your body and advocating for your health is paramount, she said, particularly if your symptoms are being dismissed as nothing to worry about.
“When you’re experiencing pain, that drives you to seek more answers,” she said.
“But when you’re only dealing with things like weight gain or flushes … in particular as a female, it can be so attributable to a generic range of possibilities.
“So getting these stories out helps build the awareness that it could be something else — and keep pushing for more tests and more answers.”
Anyone who notices a sudden change in their body should seek medical help, Caine said.
“Obviously the advice is to get anything that you think is suspicious checked,” he said.
“It doesn’t mean it’s cancer — it could be lots of different things.”
More information about sarcoma and where to find support can be found on ANZA’s website.