For months, Jess Hedden was told she had nothing more than a fibroid. Then came a phone call that changed everything: it was a rare sarcoma cancer.
The Swansea physiotherapist, aged 50, who ‘feels so lucky to be alive’ after recovering, is helping to organise a Sarcoma UK awareness and fundraising walk in Swansea called Rare But Real. Jess is determined to support research into the disease that so nearly went undetected in her own case.
It was 2023 that Jess had a feeling something wasn’t right in her abdomen. In addition, she was taking a long time to go to the toilet. A GP sent her for an ultrasound, which discovered what was thought to be a large fibroid, measuring 13 x 10cms.
On Christmas Eve, Jess had to go to A&E because of urine retention and, the next month, she saw a gynaecologist. Jess, who was also feeling very tired, was still told she had a fibroid and, in April 2024, had a hysterectomy, leaving her ovaries.
It was while she was recovering at home that Jess received a phone call to see a consultant. She sensed this was not going to be good news. She was right; she was told histology had found she had a cancerous tumour called a leiomyosarcoma. An average of 525 cases of leiomyosarcoma are diagnosed every year – about 0.17% of all cancers.
A physiotherapist who had worked in healthcare for 30 years, Jess had heard of sarcoma before and knew how serious her diagnosis was.
She did not want to tell her two teenage children as, at this point, she didn’t know the prognosis and they were taking exams.
This changed when she was told that the cancer had not spread. She said: ‘I was then able to talk to my children and reassure them that I just needed an operation.’
Surgery to remove her ovaries followed in June 2024. Since then, Jess has had regular scans to monitor her health.
She said: ‘I was so very fortunate that, after much investigation and further surgery, it hadn’t spread. As there is a high tendency of recurrence, I am monitored regularly by the gynaecology-oncology team in Cardiff.’
She added: ‘I feel so lucky to be alive and I want to channel my new-found energy into raising money for Sarcoma UK. I know how poorly funded research into sarcoma is.’
Last year, Jess and friends and family took part in a 25km ‘ultra challenge’ in the Gower Peninsula that raised £4,500.
Now she is helping to organise Sarcoma UK’s fundraising Rare But Real walk to be held at Swansea Bay Civic Centre on 22 August. There will be 3, 5 and 10km routes that walkers can complete. As well as raising funds for research into sarcoma, walkers will be able to meet others from the sarcoma community.
Sarcoma UK’s Director of Fundraising and Communications, Kerry Reeves Kneip, said: ‘Sarcomas are notoriously hard to diagnose and Jess’s experience shows just how long that journey can take, even for someone with a healthcare background. We’re so pleased she’s recovered, and hugely thankful she’s chosen to give back by helping others in the sarcoma community find support and raise vital funds for research.’
