A mum with a rare form of terminal cancer has made an emotional plea for greater support and research to help those dying from the condition.
Stephanie Thomson from Paisley, Renfrewshire, was diagnosed with an extrarenal rhabdoid tumour, which is so rare that doctors treating her admit they have never seen it in an adult patient before.
The condition is estimated to affect one in 325 million people.
Stephanie, an award winning hairdresser who loves spending time with her family and friends, praised the care she has received so far from her team.
But she says being denied access to clinical trials and experimental treatments feels like being handed a death sentence.
Stephanie’s life changed forever when she received a shock diagnosis in 2022.
She told STV News: “Further biopsies had come back saying it was an extrarenal rhabdoid tumour, which is a children’s paediatric cancer that you normally find in the kidneys.
“They explained that I would need to start an 18-week intense course of chemotherapy from the following week.”
After initially being told treatment had gone well, Stephanie’s cancer returned and she was told it is terminal.
“Six weeks later I went for a post-op, just an ordinary chest X-ray, and it showed the cancer was all over the middle of my chest, it was in my lung again,” said Stephanie.
“They arranged for a CT scan and confirmed that it was now terminal because of the amount that it was in the chest and the lung.
“Three weeks into the chemotherapy, I started getting really bad headaches and sickness. I spoke to my team, they arranged a CT scan and discovered that I’ve now got another one in my brain.”
The rareity means little research has been done into the condition
It also means Stephanie isn’t eligible for almost any clinical trials to help find a cure – something that has devastated the young mum.
She said: “I’m a single mum, I would literally try anything and if they say to me ‘safety procedures, this might kill you’; that’s a chance that I should be given as an option.
“The cancer is going to kill me anyway, so why not give the patient the option. But those options, they’re just not there, and it’s not the consultants, the doctors – my team at the Beatson is amazing, they’re prepared to try everything they possibly can.
Specialists say clinical trials are extremely strictly monitored – and that can make them unsuitable for rare cancers.
Gillian Hailstones, director of care services at Beatson Cancer Charity, said: “We need to make sure that we look at investing money into research and clinical trials that it’s going to have the best outcome that it can have for the most number of people, so it has to be very carefully controlled, it has to go through a very strict process.
“And because we’re talking about cancer being so many different disease types, then you have to look at clinical trials almost for each individual cancer type.”
Stephanie has thrown herself into fundraising and awareness and says she’ll never give up – not just for her and her family – but for everyone living with a rare form of this terminal disease.
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