Olivia’s late husband Dave had a difficult journey to his diagnosis of chondrosarcoma. He died of the disease aged just 26.
The first time Olivia remembers Dave displaying symptoms was in August 2015, when he and Olivia were on holiday in the USA. He found the flight uncomfortable due to pain in his shoulder and the top of his arm, and he struggled to sleep at night due to the pain. He thought he’d pulled a muscle stocking shelves at work, or from playing football.
Dave went to his GP in late 2015 after noticing that his Adam’s apple was off centre. Olivia now looks back on pictures and can see it was off centre during their holiday, but due to the change being gradual, they hadn’t noticed. Dave was referred for scans at the local hospital.
In February 2016, Dave received what turned out to be a misdiagnosis of ganglioneuroma, which is a benign tumour. An operation date was set for May 2016, as it wasn’t treated as an emergency. In the meantime, Dave had to self-medicate with paracetamol to deal with the pain.
‘The surgery went well, and they got most of the tumour out’ says Olivia. ‘However, because it was benign and it was so close to the nerve, they went as close to the nerve as they were happy to, so as not to cause nerve damage.’
In June 2016, Dave went for a routine follow up, which was not with the consultant who’d been dealing with him previously. Olivia says Dave found the new consultant difficult to understand.
‘Dave actually had to ask him whether he had cancer or not’ says Olivia. ‘The consultant wrote down the word chondrosarcoma on a piece of paper and gave it to him. It was only upon leaving the appointment and googling the word that Dave found out he had cancer.’
Dave’s journey to diagnosis tells us a story we so often hear from sarcoma patients and their loved ones. It is one that involves, misdiagnosis, lack of healthcare professional awareness, not having heard of sarcoma or its symptoms, and a lack of information when provided with the prognosis.
Dave experienced a misdiagnosis, which often occurs with sarcoma. Our National Sarcoma Survey results showed that around a third of respondents (30%) took more than six months to receive an accurate diagnosis, with 17% waiting more than a year.
Sarcomas can be missed on ultrasound scans, either due to machines being misused or scans being misreported. This often means patients with sarcoma are incorrectly told that they don’t have cancer and are consequently diagnosed at a later stage, and less likely to be cured. This is what we’re doing to combat this problem.
Olivia says Dave tried physio to help with the pain. As sarcomas often present as lumps or pain, they can often be mistaken for other injuries. If physiotherapists can recognise some signs and symptoms of sarcoma, they will be able to help improve the speed of diagnosis in some cases. Sarcoma UK is creating a targeted education programme for physiotherapists.
We also want to empower patients to self-advocate when seeing a healthcare professional by using the correct terminology. 75% of people in the UK do not know what sarcoma is, and those who do are not all aware of its signs and symptoms. This was sadly the case for Dave and Olivia.
We have created a dedicated resource on our website called Do I Have Sarcoma? This resource simply and clearly describes both the symptoms of sarcoma, and what to do if you think you have these symptoms.
Olivia will be taking over our Instagram on Wednesday 27 July to share more about her and Dave’s story. Please do tune in.