A 28-year-old woman endured multiple unnecessary surgeries and months of misdiagnosis before doctors finally discovered she had a rare and aggressive sarcoma cancer.
Emma Hodges, from Balham, South London, was repeatedly told that a growing lump in her groin was merely an abscess, then a blood clot, and later a cyst – when it was actually a cancerous sarcoma tumour. Further tests have been unable to confirm the tumour subtype due to its rarity but diagnosed it most closely to a soft tissue Ewing sarcoma.
It was in March of 2022 when Emma (pictured with father Andy during her treatment) went to the GP after noticing a pea-sized lump in her groin, having initially thought it was an ingrown hair follicle. The GP felt it wasn’t anything to worry about but agreed to refer her for a non-urgent scan to confirm this. However, about a week after the consultation, Emma found that the lump had alarmingly grown to the size of a golf ball and was hot and sore. She then underwent surgery to try to remove what was now assumed to be an abscess.
After that surgery, Emma noticed a blood blister at the top of her wound. She was told this was a blood clot and a second operation was needed to remove it. However, after that surgery, she knew something still wasn’t right, and the area kept growing. Following a visit to A&E, suffering from intense pain, she was admitted to gynaecology, who now believed she had a cyst. A third operation was booked, and it removed a lot of tissue. Emma woke from her surgery to be told that the surgeon had never seen anything like what she had, and neither had their colleagues. The hospital later referred her to the specialist sarcoma team at Nottingham Hospital. Her sarcoma diagnosis was then confirmed a few weeks later.
She said: ‘When I heard the word sarcoma, straight away I knew it was a form of cancer. I had heard of it because a girl in my town had sarcoma and had organised a number of fundraising events and raised awareness of sarcoma. I knew of sarcoma as a bone cancer but didn’t know it could appear anywhere on the body.’
Scans found the tumour was touching a number of organs in her abdomen, and the initial plan was that she would undergo extensive surgery which would see parts of all these organs removed. Following further test results, it was decided that Emma was to be given nine rounds of chemotherapy in an attempt to shrink the tumour ahead of surgery. This worked – the tumour shrunk from 40cm to 12cm.
Surgery to remove the tumour took place in October 2022, followed by five further rounds of chemotherapy, ending in February 2023. Happily, since then, Emma has been cancer-free, having check-ups every three months.
During her treatment, Emma, who has two sisters and a brother, had to stop her job in communications and move from London back to her parents’ home in Northampton to be cared for throughout her treatment. She added: ‘The chemotherapy was awful, and I had to put my life on hold for a year to do it – each round was 23 hours a day hooked up to a machine for five days in a row. It was a horrible time for everyone close to me, but it brought us all together.’
Family and friends have taken part in fundraisers for charity Sarcoma UK, including a netball tournament, raffles and cake sales. Her sister, Laura completed the London Marathon and her father, Andy, cycled from Land’s End to John o’ Groats.
Reflecting on her late diagnosis, Emma said: ‘I wish they had considered the alternatives rather than assuming it was the obvious. I know I was young and fit and healthy, and so it was unlikely that someone like me would have cancer – but unlikely is not impossible.’
Sarcoma UK’s Support Line Manager, Helen Stradling, said: ‘Emma’s story sadly reflects what we hear from many sarcoma patients – that getting an accurate diagnosis can be frustratingly difficult and time-consuming. With fewer than 1% of all cancer cases being sarcoma, many medical professionals may only see one case in their entire career. That’s why we continue to campaign for better awareness among healthcare professionals and the public. Earlier diagnosis leads to better outcomes, and no patient should have to go through multiple procedures before getting the correct diagnosis.
‘Anyone concerned about sarcoma symptoms can contact our specialist support line on 0808 801 0401 or email supportline@sarcoma.org.uk – our team is here to provide information and support throughout the diagnosis and treatment journey.’
