Rob's bid to make a sarcoma diagnosis easier on others by sharing his story

"It's very rare and it's terminal," the Tarrawanna great-grandfather said of his cancer diagnosis.

The 83-year-old first noticed some lesions on his scalp in early 2022, so he visited his GP who told him to "keep an eye on it".

"They seemed to be getting larger so I went back to the doctor, and I had an appointment booked in the next month with a dermatologist, and the GP suggested I ask about them," Mr Hatfield said.

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"He was quite concerned, so we sent off a biopsy.

"I had to see him again that Friday, and then he said yes, I had this rare form of cancer, and I'd need to see a neurosurgeon as soon as possible."

"I found out they'd have to remove 80 per cent of my scalp, and that they'd replace it with a muscle from my back and skin graft."

Since then, he has been through months of surgery recovery and radiotherapy, and has been fighting infections that have kept him in and out of hospital.

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Amid all this, he's also been keeping detailed notes and information on his cancer journey, in an effort to try to help others who have sarcoma.

"Originally I was pretty cranky with my GP, as if I hadn't been going to a routine appointment with a dermatologist it might have been too late by the time I found out what it was," he said.

"But after going through all the treatment at the hospital and other places, it surprised me that not many in the medical profession knew a lot about angiosarcoma."

"I thought if I write down my journey, the various stages of it and what happened and how I felt, and took some photos along the way it might help."

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"I went on Google - which I suppose you shouldn't do - and there's not much positive news there, so I wanted to share my story."

"I didn't know what to expect along the way, so I thought if someone else is going to have to go through it, it would make them a bit more confident."

July is Sarcoma Awareness Month, and with the Australia and New Zealand Sarcoma Association (ANZSA), Mr Hatfield is highlighting the importance of ongoing research into rare and complex cancers to increase survival rates.

Sarcoma has more than 80 different types and can form anywhere in the body at any age, which means there is not always a clinical trial or study available for each specific sub-type.

To help change this, the ANZSA National Sarcoma Database gathers sarcoma-specific clinical data covering diagnosis, treatment, and outcomes for patients with bone and soft tissue tumours.

The organisation's CEO Dr Denise Caruso said real-world evidence was vital in sarcoma research.

"Our database is a rich resource of data to inform the landscape of sarcoma care and complement clinical trials in Australia," she said.

"Every study on sarcoma brings us one step closer to greater understanding , and one step closer to providing hope for the patients and families affected by this rare and devastating disease."

Mr Hatfield said he hoped there would one day be a cure.

"There's still no cure, at this stage, but I'm ten months into it now, so I'm back trying to live my normal life, spending time with my family and I've been very lucky to have my lovely wife Pamela who has been my rock," he said.

"The medical staff I've encountered have also just been so wonderful and caring, I can't fault how I've been treated."

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