A Canberra mum, who assumed her hip pain was a sports injury for to years before finding out it was a rare cancer, is sharing her story to try and help other avoid the same fate. This sarcoma awareness month, specialists say delayed and misdiagnosis of sarcoma is a common complaint, compounded by limited research funding.
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00:00When Kayla Graham-Bowman developed a sore hip, she blamed her daily gym habit and eight
00:07years in the military.
00:08You know, all those years carrying packs and weapons took quite a toll.
00:14But 18 months later, when the pain had become unbearable and a lump appeared, the mum of
00:19two figured she'd torn a muscle and made an appointment with her GP.
00:24I went up there and said, yep, I've pulled a muscle, I need a cortisone injection, and
00:31he agreed.
00:32He booked me in for an ultrasound and it went pretty downhill from there.
00:38Suspicions of sarcoma, a rare cancer, were quickly confirmed.
00:43I woke up with drains, so confused in ICU, like I just went in for a biopsy, I've come
00:50out with drains everywhere, massive incision in my thigh.
00:54I had a port-a-cath inserted and I think five days after that I started chemotherapy.
01:00Sarcoma originates in bone and soft tissue, like muscle, fat, cartilage and ligaments.
01:06It's notoriously tricky to diagnose because there are more than 80 subtypes and no hallmark.
01:13It's not like breast cancer where if you feel a breast lump you automatically will say,
01:17look, this is something serious, I need to go and get it checked out.
01:21Symptoms include everything from a painful joint or painless lump to fever, fatigue and
01:27weight gain.
01:28And with just two and a half thousand cases diagnosed in Australia each year, GPs usually
01:33have limited experience.
01:36For many months there, past offers, sporting injury, ligament injury, have some physio,
01:42have some anti-inflammatories and it's not getting better.
01:45Surgery and intravenous chemotherapy worked for Kayla for a while, but two years ago the
01:50sarcoma returned and spread to her lungs.
01:55She's still fighting with daily chemo pills.
01:58It's just another reminder that your life isn't normal, you're actually still pretty
02:04unwell.
02:05She hopes sharing her story will raise awareness and research funds.
02:09Ability to conduct large trials is somewhat limited by the lack of funding.
02:15If we don't grab the attention of the government to get more funding, nothing's going to change.
02:24Earlier this year, the federal government announced $750 million for clinical trials
02:30addressing all rare cancers and rare diseases over 10 years.