One of Britain's leading young scientists battling a rare heart cancer has been given just months left to live - after doctors thought she'd just pulled a muscle. Kirsty Smitten, 28, is a “world leading” scientist set to potentially save tens of millions of lives with her new antibiotic medicine.
She was named a Forbes under 30 scientist and last month was crowned FSB's Young Entrepreneur of the Year. But she said her terminal diagnosis has turned her life upside down.
Her cancer, cardiac angiosarcoma, is so rare her surgeon had never seen it before and only two people are diagnosed with it a year n the UK. And she said when she first arrived at A&E in November last year with severe heart pain she was sent away by the GP who told her to take codeine for a pulled muscle.
The doctor told her she would have to wait three hours for blood tests and the X-Ray but Kirsty said she knew something wasn't right and ignored the advice. She waited for 11 hours before CT scan revealed a 6cm cancerous tumour in her right atrium, which is normally 3cm wide.
Kirsty said: "Other than the fact I was in agony all my health was absolutely fine, I didn’t have any problems with heart rate or anything.
“But then they did a CT scan for my blood clot and found a 6cm tumour in my heart, which, obviously, was a bit of a shock, because I had no other symptoms prior to that. It’s been a bit hectic since then. They found the tumour but initially they didn’t think it would be cancerous because it’s really, really rare."
It’s scarcity meant it took three months to diagnose Kirsty. Today, there is a 68 percent chance she will die in the next 12 months. To manage the constant pain has to take for opioids a day, paracetamol, and ibuprofen. Chemotherapy happens every Wednesday now too.
Despite that she continues her vital work. While doing her microbiology PhD at University of Sheffield, the science star developed a new class of antibiotics treating multi-drug resistant bacteria.
Big pharma’s interest was piqued, and through funding Kirsty set up MetalloBio in March 2021 - tackling the challenge of becoming a CEO while finishing her PhD. Months later she was ranked on Forbes 30 Under 30.and the company received an award from the Royal Society of Chemistry's emerging technologies competition.
But the diagnosis is threatening her business. She said: “If we get the new drugs on the market it will potentially save tens of millions of lives.
“A new class of antibiotics hasn’t reached clinics in over 30 years, and by 2050 antibiotic microbial resistance is expected to kill 10 million people, which is a death every three seconds per year. We would be able to prevent that. I now see how important my work is, because if I get an infection I have about an hour to get IV antibiotics before it becomes fatal because with chemo I don’t have an immune system at the moment.
“I still work, I just can’t work the same as I used to and i can’t go to to as many in person things. I think it’s hit a lot of our investments. A lot of the investors we have are very committed to me, and how I built the company and the passion I have for what we’re doing and my drive to take it forward.
“As bad as it is, me being ill hampers that. If you take away that drive, is the company still going to succeed?”
Just over a year after setting up MetalloBio, she said she was at the peak of her health, playing hockey and football once or twice a day, no ill-health, no fatigue, and travelling across the globe to speak at science conferences. But in November last year she was woken up the night with severe chest pain.
Due to Kirsty’s frequent flights to America her mum suspected it was a blood clot, and they headed to A&E for tests. Given her age and her health the doctor concluded with certainty that she pulled a muscle in the gym or playing football.
She added: “To get any kind of growth in your heart is very rare because your heart cells don’t replicate after a certain age. I work in med-tech, and no one wants to fund something that only one person in 36 million is going to use, so there’s no new developments.
Research into cardiac angiosarcoma is lacking because it affects so few people. Doctors said her tumour was inoperable, but as a scientist she delved into the research and learned of people with more severe cases having the “pretty much their whole hearts” removed and rebuilt.
The Royal Marsden, a world-leading cancer care charity in London, gave her a second opinion and said they would perform surgery. This gives Kirsty a 10 percent chance of surviving for five years. Despite its severity, her heart was and is functioning at 100 percent.
She said: “For someone who's got metastasis, there's life expectancy of seven months once diagnosed. For someone that doesn't have metastasis, one to two years, and that’s if you can have an operation. New things are coming out, and we just need to keep buying me time. But there’s still a 68 percent chance I’ll die within 12 months of diagnosis.
“If you saw me now and saw me when you get diagnosed it’s just barbaric because I still look absolutely fine. Other than the PICC (Peripherally Inserted Central Catheter) in my arm you wouldn’t know I was ill. My friends are just like, how on earth is this going on? Because you just look the exact same. I can still walk and exercise and stuff."
Kirsty has struggled to find people like her. A few with cardiac angiosarcoma speak on a Facebook group, all are between 20 and 30 years old with the one exception aged 59. She said: “It’s usually people who are 20 to 30 years old, I don’t think they know why, and at that point I had my whole life ahead of me. I thought I was going to have kids and a family and I’ve told I’ve got seven months to live.
“I had to have emergency chemotherapy and I didn’t have a chance to freeze my eggs.
“So it’s been a bit of a tough couple of months."
