When Kaela started experiencing sarcoma symptoms she wrote it off as a pulled muscle, and experts say her experience isn't uncommon
By Emmy GrovesWhen Kaela Graham-Bowman developed a sore hip, she thought her daily gym habit and eight years in the military was to blame.
"I joined the army when I was 19 and was [immediately] deployed to the Middle East," she said.
"It was what they call 'fighting season' and we did a lot of morgue pickets … it wasn't nice.
"The pain was radiating down to my knee for about a year and a half [to] two years and I initially thought it was my military service, you know, 'all those years carrying packs and weapons took quite a toll'."
The mother-of-two, then working as an enrolled nurse, delayed making a GP appointment until the pain was unbearable and disturbing her sleep, and "what seemed like overnight, a lump popped up".
Still, she was confident of a simple diagnosis and quick fix.
"As a nurse – I think we're all guilty of it; I certainly am! [Thinking] 'I'm a nurse, I know what I'm doing!'," Ms Graham-Bowman said.
"I turned up [at my GP] and said, 'I've pulled a muscle, I need a cortisone injection' and he agreed.
"I was booked in for an ultrasound and it went pretty downhill from there. I just remember … the look on the [sonographer's] face. He literally ran out of the room to get the doctor.
"And, obviously, I know that look; I've done that look. I knew it was bad."
The doctor at the medical imaging clinic suspected sarcoma, a rare cancer, and referred Ms Graham-Bowman to a specialist for a PET scan and biopsy.
"I woke up [from the biopsy] with drains, so confused, in the ICU," she said
"Like, I just went in for a biopsy and I've come out with drains everywhere [and a] massive incision in my thigh."
She learned surgeons had found the sarcoma tumour wrapped around her right femoral artery.
"They told my father, 'If we sew her up now, she will die', so they had to get it out immediately," Ms Graham-Bowman said.
Two weeks later a portacath was implanted in her chest, and five days after that she started chemotherapy.
Complex nature of sarcoma makes identification challenging
Dr Vivek Bhadri, a medical oncologist and paediatric haematologist who works within the sarcoma unit at Chris O'Brien Lifehouse, said many sarcoma patients have a similar diagnosis experience.
"Kaela's story is not unique at all," he said.
"There can be delays through patients not recognising that their symptoms could be something more serious, or GPs and other doctors not having a high level of suspicion."
The complex nature of sarcoma makes identification particularly challenging.
It originates in bone and soft tissue like muscle, fat, cartilage and ligaments, can form almost anywhere in the body, at any age, and has more than 80 subtypes.
"Some are very aggressive, small tumours, which can spread rapidly throughout the body, whereas others grow slower and generally don't spread," Dr Bhadri said.
Also, there's no symptomatic giveaway or hallmark. Symptoms can include a painful joint, a painless lump, fever, unexplained fatigue, constipation, weight gain and weight loss.
"It's not like breast cancer where if you feel a breast lump, you automatically will say, 'look, this is something serious, I need to go and get it checked out'," Dr Bhadri said.
Symptoms often mistaken for injuries
About 2,500 cases are diagnosed in Australia each year and, of those, 250 are children and young adults.
Dr Bhadri said patients can often have symptoms for a long time before they seek help and, because sarcomas are so rare, GPs may not have much experience seeing a patient with them.
"In fact, most GPs may only see one or two sarcoma patients through their practice, through their career so, it's not high on their list of possibilities when someone comes in with a lump or a painful joint," Dr Bhadri said.
"We've had stories of teenage kids, sporty kids, who complain of pain in their knee and eventually it turns out they've got a bone sarcoma but for many months, they're passed off as sporting injury, [like a] ligament injury.
"Have some physio, have some anti-inflammatories, and it's not getting better.
"But if you're a GP, who sees 100 children with sore knees, it's very difficult to know how many of those are likely to have sarcoma … the answer is very few."
When it comes to patient prognosis, survival rates for sarcoma vary and depend on factors like subtype and location.
A combination of chemotherapy, radiotherapy, and surgery is effective for many patients, but Dr Bhadri said 25 to 30 per cent do not survive.
The trio of treatments worked for Ms Graham-Bowman for a while, who said she was "clear" for two years.
But the sarcoma returned two years ago and spread to her lungs. She's since had half of one lung removed and is on daily oral chemotherapy.
"It's a lot less harsh on the body's system than IV chemotherapy but it still comes with side effects, like fatigue and nausea, upset tummy," she said.
"So it's not a walk in the park, but it's a lot better."
She's returned to "almost" full-time work as an emergency department nurse but spends as much time as possible on "experiences" with her young children, Violet and Aston.
Ms Graham-Bowman said she wanted to share her story to raise awareness among the general and medical community, and parliamentarians.
"If we don't raise more awareness, if we don't grab the attention of the government, nothing's going to change," she said.
"Without people knowing about sarcoma, the chance of them being diagnosed so much later and having poor outcomes is really, really high."
July is Sarcoma Awareness Month, and this year the Australia and New Zealand Sarcoma Association is promoting the importance of ongoing research, funding, and clinical trials.
'We don't get a huge amount of funding'
The Senate Community Affairs References Committee had spent more than a year scrutinising everything from barriers to screening, diagnosis, and access to appropriate treatment, to support services, and Commonwealth funding for research, along with almost 150 submissions and testimony provided during five public hearings.
The committee's 41 recommendations include calls on the government to "ensure continued funding for rare and less common cancer projects to reduce existing research and clinical trial disparities" and "consider new mechanisms to encourage greater private sector investment in rare and less common cancer-related research and clinical trial sponsorship".
Last month, the federal government outlined a $750 million Clinical Trials Activity initiative, as part of the Medical Research Futures Fund.
It will be spread over 10 years and between the more than 200 known rare cancers and more than 7,000 rare diseases.
"We have a lot of very generous philanthropic donors … but we don't get a huge amount of funding from the government [and] our ability to conduct large [clinical] trials is somewhat limited," Dr Bhadri said.
"But we hope through programs like Sarcoma Awareness Month, that more people can hear about what we do; hear about sarcoma and consider donating towards our research."
Ms Graham-Bowman added she hoped people would "spread the word".
"We need more funding; we need more research. Without that … we are dying," she said.