A 44-year-old charity worker with a rare terminal cancer has called for more training for GPs to recognise rare sarcoma cancers.
Darrell McDonald, a head of finance at a national charity and father of two from Twickenham, was misdiagnosed for over two months. In 2020, at the height of the COVID-19 pandemic, Darrell noticed a lump on his neck. His local surgery was reluctant to see him due to the pandemic. His GP thought it was an infection and prescribed antibiotics. After the lump refused to go away, they then did an ultrasound and a biopsy, at this point still not knowing what it was. Then, on his 40th Birthday, on a day which he was meant to celebrate as he had also been offered a new job, Darrell was told he had synovial sarcoma cancer. Synovial sarcomas are so rare they account for less than half of one percent of all cancer diagnoses.
Remembering when he got the call offering him the new job, Darrell said, “They remarked, you don’t seem to be excited at the news. I said, actually, I have just been told I have cancer”. Darrell then had a PET CT scan, which revealed the cancer had spread to his lungs, and he was told the prognosis was pretty poor. Then, within 3-4 weeks of the discovery of the tumours on his lungs, an MRI spotted two lesions in his brain. Darrell underwent pioneering radiotherapy called Cyberknife to radiate the tumours in his brain. As the cancer continued to grow in his lungs, he was put through chemotherapy to try to reduce it. Darrell said: “They used drugs called doxorubicin and ifosfamide, which are so toxic you can only have six rounds of that combination. It was so bad that one day, I fainted and hit my head on the sink in the bathroom at the hospital. Because of Covid, I was always on my own, not able to bond with other patients going through the same thing – isolated to my room. My family and friends wanted to support me but Covid restrictions made it hard to, although the wonderful people that they are, they found ingenious ways to do so, which I will be forever grateful for. It was a really horrific time. My kids were 3 and 5 when I was diagnosed, and it wasn’t easy to know how or what to tell them – my wife and my kids are more than my world; they are my purpose! My wife and I have a great partnership. We decided to focus on things we could control and not play the part of victim but instead to fight this. And at the same time enjoy the now by spending quality time together as a family. Of course, we have our moments of being upset, but we are generally positive and doing lots of things together. I have even written a book called ‘Straight Red?’ which is all about keeping hoping even when the odds are low – a message not just for cancer but for life! All the profits from the book (on Amazon) go to Sarcoma UK to help fight this horrendous disease”
Speaking about his diagnosis, Darrell said: “As sarcoma is rare, it doesn’t always get considered, and so including it in training for GPs and others would help bring down the occurrence of misdiagnosis.
Andy French, Policy and Public Affairs Manager at Sarcoma UK said: “Darrell’s story underscores how important it is for people with sarcoma to get an early diagnosis. And Darrell’s right when he says that people working in the NHS need training in sarcoma. That’s why at Sarcoma UK, we’ve worked with our partners to develop an online, accredited training module for GPs, an e-learning module for physiotherapists, and a video for medical students and junior doctors. These resources are aimed at helping healthcare professionals to better recognise the signs and symptoms of sarcoma, addressing the exact concerns Darrell has raised.
By giving healthcare professionals the right skills and knowledge, we are aiming to prevent people with sarcoma from being misdiagnosed; so that they can instead get an early diagnosis and fast access to treatment. This initiative, alongside our continued
investment in research and support services, marks a significant step forward in our mission to ensure that everyone affected by sarcoma receives the best treatment, care, information and support available and to create the treatments of the future.”
This month is Sarcoma Awareness Month, and Darrell is part of a billboard campaign around the country featuring people revealing the number of days it took to be diagnosed with sarcoma. Over 1 in 3 people wait over six months to be diagnosed with the rare cancer.
