A woman who was diagnosed with a very rare cancer is taking part in the Great North Run to raise awareness of the disease.
Hayley Brewer, 39, from Ramsbottom, near Manchester, was diagnosed with endometrial stromal sarcoma (ESS), sometimes called uterine sarcoma, which is a rare subtype of sarcoma cancer. There are an average of just 79 cases diagnosed every year in England.
It was in February last year that Hayley started having heavy periods. Initially, she was told by a GP that this was not unusual for women her age.
By the summer, her bleeding was ‘horrendous’. Hayley, a teacher, could only wear black and had to take two pairs of trousers to work. In addition, she was now having pains in her side. She saw another GP who told Hayley that her uterus was distended. Following an ultrasound scan, Hayley was told she had a fibroid (a non-cancerous growth in the womb).
She was referred to a gynaecologist in November who sent Hayley for an MRI scan.
Hayley received the news that the MRI scan had found something suspicious that could be sarcoma. ‘I’d never heard of sarcoma before, but this was really worrying,’ admits Hayley. In January this year, she had a full abdominal hysterectomy to ensure that if there was a sarcoma it would be removed.
The surgery was a success but Hayley then had to wait for the results of histology (an analysis of her tissue). Over a month after her operation, and feeling increasingly worried, Hayley had to chase up the various parts of the heath service she had been through to confirm her diagnosis. Eventually, she was told she’d had ESS.
‘When it was finally confirmed, I was really scared,’ she said. ‘A nurse pointed me to the website of charity Sarcoma UK and the information there was brilliant and really cleared it up. I also called the Sarcoma UK Support Line who were amazing. After I spoke to them, I felt a bit more calm about everything.’
She also found an online ESS support group where she has been able to contact women in the same situation as her from all over the world.
Hayley, who has two children aged 14 and 11, is now having three-monthly scans to make sure sarcoma does not recur in other parts of her body.
She will be running to raise funds for Sarcoma UK in the Great North Run, which is in Newcastle on 8 September. She will be joined by her husband Ventnor, who is an ultrarunner.
She said: ‘I’m not really a runner but after my hysterectomy I thought ‘what can I do to lift me, to give me a goal’. We also need more awareness and research for sarcoma, especially for my particular type, which is so rare.
‘Prior to this diagnosis, we’d never heard of this type of cancer, as sarcomas are so unusual. If you feel like something isn’t right, especially if you’re a woman having any odd gynaecological symptoms, get it checked – it could just save your life.’
Dr Sorrel Bickley, Director of Research, Policy and Support at Sarcoma UK, said: ‘Earlier this year, Sarcoma UK announced £149,973 in funding for University College London to research what drives endometrial stromal sarcoma. The research project will look in particular at a genetic change which may stop the immune system working properly in these cancers, and whether drugs could prevent this damaging effect.
‘Without fundraisers like Hayley we wouldn’t be able to invest these kind of sums into research, so by taking part in the Great North Run she is helping to accelerate the search for new sarcoma treatments, as well as supporting all the information and advice services we offer to those affected by sarcoma.’
To donate to Hayley, go to Sarcoma UK: Hayley’s page (enthuse.com)
