A young woman who is fundraising to access a cancer drug costing almost £5,000 per dose has told of the moment doctors mistook her tumour for a baby. Verity Barker, then 17, had visited her GP after feeling bloated, tired and unable to comfortably lie down. Doctors believed she was 12 weeks pregnant and she was sent for an ultrasound.
Verity said: “It’s so important to know your own body because when you know something, you want it to be listened to. I knew I wasn’t pregnant, that something more serious was going on.”
An ultrasound revealed an 11cm growth. When Verity underwent surgery a while later, medics discovered the growth had enlarged to 25cm and was wrapped around her ovary. The rugby ball-sized mass was removed, and she was diagnosed with ovarian cancer.
In the two years that followed, Verity had fertility treatment to freeze embryos, chemotherapy, a nine-hour surgery to remove 22 tumours in her abdomen, a full hysterectomy and bowel resection. Then, a gene test revealed she did not have ovarian cancer – she had a very rare type of sarcoma called desmoplastic small round cell tumour (DSRCT).
Verity said: “The word ‘cancer’ is hard enough to digest. As a teenager at the time, my only understanding came from films or books or the memories of others. Having to comprehend having an entirely different one, rarer and harder to treat, grappling with words like ‘incurable’ definitely sent me spiralling.”
Now 26, Verity has undergone more major operations, chemotherapy and joined clinical trials of experimental drugs. Last summer, she was warned her liver was failing and told she had just months to live.
Verity and her mum, Lydia Grant, are fundraising for one final treatment option they hope could give her more precious time. The drug, Enhertu, is used on the NHS for breast cancer and approved for use to treat certain advanced solid tumours. However, it is not routinely funded for sarcoma.
Lydia said: “According to worldwide research, and our worldwide friends with DSRCT, Enhertu works effectively to reduce tumours and give patients more time to live. As the drug has to be prescribed off-label for non-approved cancers, we need to pay for it. It has to be administered every three weeks and costs £4,785 per dose.”
Verity has received a first dose of Enhertu, and her family hope to raise enough for one year of treatment. Lydia said their goal was to keep her daughter alive for long enough to see doctors discover a cure for DSRCT.
She added: “Her spirit and determination have already defied the odds, and she hopes and believes she will continue to defy. Verity is the most brave and inspiring person I’ve ever met, and my love for my precious child could not be any bigger.”
Verity got married to her partner Luke in 2022 and appeared in front of thousands of people at the Royal Albert Hall to speak about her experience. She said: “You have to live in your own head every day, so it has to be a nice place to exist, and that’s why I focus as much of my energy on my mental resilience.
“The moment I stop believing my body can do something where the odds are stacked up against it, I may as well have given up. My body doesn’t owe me a victory. But I wish it understood how desperately I’m cheering for it, through every procedure, treatment and obstacle.”
About 16 people are diagnosed with sarcoma every day in the UK, adding up to 5,900 every year. There are around 100 different sub-types of sarcoma cancer.
Sarcoma UK’s director of research, policy and support, Dr Sorrel Bickley, said: “DSRCT is incredibly rare and has very few treatment options, which is why Sarcoma UK is funding two projects led by Professor Janet Shipley at the Institute of Cancer Research.
“One is testing whether a particular drug can modify how DSRCT cells grow, and the other is studying how DSRCT cells change and adapt to survive treatment. Both aim to find more effective and gentler treatments for young people like Verity, who so often face intensive chemotherapy and major surgery that does not work long term.”
You can support Verity’s fundraising here.
This story originally appeared on Express.co.uk
