Josh May is fighting a cancer so rare, he’s the only living patient in the world

“Look, there is nobody else in the world alive with this cancer,” Josh May was told. He’s making the most of his life and there may yet be some treatment that could help.

Cancer patient Josh May at the West Beach Skate Park. Picture: Matt Turner

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Josh May’s cancer battle is a solitary one — he is fighting a disease so rare that he is the only known case in the world.

The 26-year-old North Plympton man was getting ready for a wine tour with friends in August last year when his life changed forever.

After noticing a rash under his eyes and across his chest, he visited his doctor and was soon rushed to hospital, where a 10cm growth was discovered on his spleen.

“The first nurse I spoke to said, ‘It doesn’t look cancerous, it doesn’t seem to be growing in the blood’,” Mr May said.

“I didn’t even think cancer at all, like, I’m 26 years old — who would think that?”

When it came time for a specialist to deliver the grim diagnosis, Mr May said he could not bear to remain in the room.

“I said to my mum, ‘Whatever it is, I don’t want to know, I’d rather hear it from you than a doctor I’d never bloody met’,” he said.

“I came back from a test and I saw the doctor was leaving the room and my whole family was crying when I got back there.”

Mr May’s history of Crohn’s disease — an inflammatory bowel disease — had made him vulnerable to the rare cancer, hepatosplenic gamma-delta T cell lymphoma, which affects the liver and spleen.

Through Rare Cancers Australia, his cousin began to search for other people fighting the disease but the service was unable to find any current cases in the world.

“When they told me: ‘Look, there is nobody else in the world alive with this cancer’ you’re like, ‘OK it’s either very rare, or I’m going to die pretty soon’; either way, both aren’t very good,” Mr May said.

There are 11 recorded cases of the disease developing in young males with Crohn’s disease who were treated with the drug azathioprine. After 10 months of ineffective chemotherapy treatment, Mr May was advised to try an invasive treatment called Romidepsin which costs $300,000.

He started an online fundraising campaign through Rare Cancers Australia and raised $22,000 in the first 24 hours, rising to more than $30,000 in the first week.

Romidepsin treatment does not significantly increase Mr May’s chances of survival and his specialist has told him it’s “no miracle drug”.

But it could lengthen his life by three months.

Mr May said he now struggled with missing out on simple things he had previously taken for granted, such as wine tours and spending time at the skate park.

“You want to try to be as positive as you can but when all your mates are going to Sea and Vines, and you just want to go there and you know you can’t do it, that’s one of the hardest things,” he said.

Mr May does not take life for granted any more, because he does not know how long he has left to enjoy it.

“You have to be positive or you will die … unless something bad happens to you or your family, you don’t know how short life is,” he said.

Donate to Mr May’s cause at here