A Kiwi-born PhD student living in Australia and diagnosed with one of the most rare and aggressive forms of cancer in the world says he remains hopeful for his future as he undergoes intensive treatment.
Twenty-five-year-old Hamish Shaw told 1News he was from a “really close-knit” family of six born and raised in Christchurch. His father works as a Professor of Intensive Care at Otago University and his mother also works in healthcare.
Shaw studied telecommunications engineering at the University of Canterbury, before moving to Sydney in 2021 when he received a scholarship to study his pursue his PhD at UNSW.
He returned to New Zealand for Christmas 2023 when he first experienced symptoms of nausea and fatigue. By March 2024, he felt a “hard, reasonably big lump” in his lower right abdomen, roughly five centimetres below his belly button.
“Because I was raised by two doctors, my mum’s favourite thing to say is that ‘if it hurts when you touch it, don’t do that’. That’s what we were raised to do so I thought, ‘I’ll keep an eye on it and maybe it will go away’.”
He took a deep breath: “But then it didn’t go away.”
Shaw said some GPs likely would have dismissed the initial lump as a non-cancerous lipoma made of fat cells beneath the skin, which is classified as a tumour but “usually harmless”. However, his Sydney-based GP “felt something was weird about it” and immediately referred him to get a CT scan of his abdomen.
“He called me back an hour later, and it’s the worst conversation you ever want to hear from the doctor on the phone. He goes ‘Hamish, I think we should have a chat’. And from that moment, your heart just sinks. You just go, ‘no, this is not fun’ and it’s not going to be a good conversation at all.”
Shaw said the scan “lit up like a Christmas tree” with two reasonably aggressive tumours “about the size of a fist” on his peritoneum, which is the inside of the abdomen lining. He said it was unclear at that point exactly what type of cancer he had, “just that it was bad”.
He had gone in for a CT scan 18 months earlier due to an appendicitis and the scan had come back “completely clean” at the time.
“So we knew that this fist-sized lump and several smaller lumps had grown within 18 months, which is incredibly quick and just really interesting when you think about it. It took about a week and a half to come back with the results, and he said ‘you’ve got something called desmoplastic small blue round cell tumour, or DSRCT’.”
DSRCT is a high-grade, ultra-rare soft tissue sarcoma cancer that was first identified in 1989. It affects roughly 1 in every 5 million people and most commonly presents as abdominal masses in males aged between 20 and 30, but can happen to anyone.
“By a technicality I am Stage Four, because I have something in one of my lymph nodes down near my diaphragm,” said Shaw.
He said he was “incredibly relieved” to hear the cancer had not metastasised to any of his organs and that he seemed to be reacting well to treatment so far.
“I’m the rarest of the rare and the prognosis for this isn’t good,” Shaw trailed off. “But I’m hoping to be lucky.”
‘Throwing the kitchen sink at it’
Currently Shaw’s cancer was being managed through a combination of chemotherapy, radiation, and aggressive surgical resection in Sydney, however globally prognosis remained poor as the majority of patients develop high rates of disease recurrence or die within three years.
He said he had wanted to start chemotherapy “as soon as possible” given the aggressive nature of the cancer, and his oncologist said they were “throwing the kitchen sink at it”.
“The quicker you’re into it, the quicker you’re out of it, to quote Mary Poppins,” he laughed.
Shaw said after just three cycles of treatment in June, his body had reacted positively to the chemotherapy and the tumours already felt “smaller and softer”.
“It just makes it a whole lot more possible for surgery to work.”
In August, Shaw had further scans and an exploratory laparoscopy which he said was “looking really good” and would undergo cytoreductive surgery and hipec on September 17.
Shaw said as a PhD student with two parents from a healthcare background, he approached his treatment from an academic perspective and tried not to catastrophise.
“I’m doing what I can. This is my job now, I’m showing up, I’m doing the job and hopefully getting better.”
“Sometimes there are some bad days and you can’t help but worry. But I try not to dwell on it and say, ‘OK, in four months’ time I will know if the surgery is going well. I will know how all of the PET scan results or chemotherapy are doing what we’re going to do. Then there are other alternative therapies that we can try.”
He said he wanted to share his story in the hope others with rare cancers could see they are not alone.
Associate professor at Auckland University’s centre for cancer research and medical oncologist Dr George Laking said the “frustrating” thing about treating this illness is that it typically impacts young, fit men and “often tends to come back”.
“That’s kind of the depressing thing about it. After they respond to chemotherapy and it can be removed with surgery, it has an ability to come back and so then it’s like, what do you do the second time around of treatment?”
He said the initial treatment was a “key time” for fighting cancer as it was “much harder to treat and bring under control” once it returned.
‘I chose to remain hopeful’
“Cancer treatments are changing all the time. And all I’m telling myself is that for the next five years something might come around the corner. I’ll go with that, I choose to remain hopeful,” Shaw said.
He said he was in a position where he could stay in Australia for treatment – an option he acknowledged was not available to all. His mum and sister had come over to support him.
“I would love for it to be cured completely. For me to go into remission and it never comes back. But I’m hopeful. Really, reasonably hopeful that we can clear it all out at the moment, get the abdominal radiation and get it gone. I don’t want to say it will, but there’s a reasonably high probability that it will come back, I think around 50%.”
Shaw was emotional as he said: “Hope doesn’t go away, no matter what. And you have to have it, because it’s something we fundamentally need as humans.”