Mum with rare cancer says she's been given 'death sentence' after trial decision

16 February 2024 , 07:06

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Stephanie and her son Logan (Image: stephanie thomson)

A 34-year-old mum battling a rare form of cancer feels she's been given a "death sentence" after being denied access to medical trials.

Stephanie Thomson was told her cancer is too rare for her to be considered for potentially life-saving trials. Despite the heartbreaking news from the Beatson Oncology Centre, Stephanie remains determined to find alternative treatments after the aggressive condition spread to her lungs and brain.

Her loved ones are tirelessly raising funds to cover the cost of any potential wellbeing programmes not currently available on the NHS. Stephanie was diagnosed with an extrarenal rhabdoid tumour; a rare cancer usually found in children in September last year. Even though she was declared cancer-free in October 2023, doctors informed her seven weeks later that it had returned and spread to her lungs, lymph nodes, chest cavity, and brain. In a heartfelt social media post, Stephanie expressed her desire to represent those like her who feel "left behind" by modern medicine. She shared: "It was explained to me today that they expect I won't even qualify for any clinical drug trials because my cancer is so rare.

"They have never treated it, therefore the MHRA wouldn't safety or financially approve me for any trial even though I'm at the end of the line and anything is better than trying nothing.

"They explained that there is no money at all funded into researching rare cancers and therefore they don't even get researched here at all. The UK has the hardest and strictest criteria to fit for clinical trials and I was told I wouldn't tick the boxes. My son deserves a mother and I deserve more than ticking a few boxes to decide whether I get that chance to live or try known treatments!"

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Stephanie, a popular award-winning hair stylist from Paisley (stephanie thomson)

"I'm that rare no matter what they try it is 50/50 chance...just one of those trials could work, they don't know until they try, but I won't get the chance."

Explaining how terminally ill patients should be given the choice of trials, Stephanie went on to say: "My point is I'm 34 years old fighting a rare cancer and being dealt a death sentence but because no funding is put into rare cancers, the hospital's hands are tied as to what they can do to help me."

She is asking for Brits to help by calling on their local MPs to ask for increased funding for research into rare cancers.

Stephanie said: "Please help me and help other patients, we are being left behind. There are many of us and it's time we had a voice!" Why do the government get that chance [to decide who gets a trial], why can't patients decide what they prepared to try and go through?"

Stephanie has already endured 17 months of gruelling cancer treatment (stephanie thomson)

Her friends and family are doing all they can to support her and have been raising money to pay for different treatments that might help.

They set up an online page to collect donations and also put on a night at a local hotel with music and a raffle with big prizes.

Stephanie's family have thrown themselves into fundraising (stephanie thomson)

The party happened last Friday, just after World Cancer Day, and was a big hit thanks to Breakthrough Entertainment. Acts like Drums 'n' Roses and Paolo Martini sang, and Laura B performed too.

Stephanie's workmates at Kouture Hair and Beauty also helped by having a special day where they did hair, makeup, and nails to raise more money. Together, all these efforts brought in £7,000. Stephanie said: "I am absolutely overwhelmed by everyone's support. I just can't believe the love and support I've been shown, not only from friends and family but from strangers far and wide on social media too. I have an army behind me.

"Please help me and help other patients, we are being left behind. There are many of us and it's time we had a voice! Why do the government get that chance [to decide who gets a trial], why can't patients decide what they prepared to try and go through? I am absolutely overwhelmed by everyone's support," Stephanie said. "I just can't believe the love and support I've been shown, not only from friends and family but from strangers far and wide on social media too. I have an army behind me."

Edel Kenealy