Carolyn  - Impact of Sarcoma
Wednesday, July 22, 2020

‘When I was told that I had sarcoma, I went from not panicking to planning my own funeral. It was horrendous.’

When we speak to Carolyn*, she’s at the halfway point of her course of radiotherapy, which started during Sarcoma Awareness Week. She is expecting to have surgery after the summer.

‘I noticed the inside of my right knee looked a bit swollen in January 2020. I had no pain, no lump and no real worries about it. A month later, as I was due to take a flight, I thought it might be a blood clot, and so went to my practitioner. He reckoned it might be a lipoma and that it warranted a closer look.’

She first heard the word ‘sarcoma’ after an ultrasound. ‘I had walked in for the scan thinking they’d tell me it was a lipoma, and that once all of this coronavirus was over, I’d be brought back in and have it removed.’

Carolyn wasn’t that alarmed at this point. ‘To be honest, it still didn’t mean anything to me, I didn’t go home and panic, in fact that weekend I just carried on as normal. I was referred back to my GP who then referred me for a MRI scan within two weeks.’ The scan indicated a benign tumour, but seeing as the term ‘sarcoma’ had been used, Carolyn was referred to the nearest sarcoma specialist centre.

Whatever calm she had disappeared.  

‘When I was told that I had sarcoma, I went from not panicking to planning my own funeral. It was horrendous.’

‘The hardest part was around Dr Google. You shouldn’t go and google it, but you do. I had heard the term ‘sarcoma’ and after reading about all those hundreds of sub-types, I was convinced I had a bone sarcoma, then one of the soft tissue ones. I was trying to self-diagnose. Being told [after the MRI] that it looked like it was benign, was a relief, but then being referred to the sarcoma service, felt like really mixed messaging.’

‘This can’t be I thought to myself, I’m fit and healthy. But every ache and pain in the body you become paranoid, you become so irrational, you’re convinced the worst is going to happen. I remember when they told me that it was a sarcoma in my lower thigh, I kept telling the, just go and cut it [the leg] off, I can get by without that leg, you just become so irrational.’  

‘I bought three books for each of my children. I was going to start filling them with all the things I wasn’t going to have time to tell them.’

‘Right now, in myself I feel fit and healthy. I do have occasional wobbles, and I think to myself ‘this shouldn’t even be happening. Thankfully the full body scans showed no spread of the cancer, and once you know that, it’s a relief, that is all I’m dealing with.’

Carolyn is one of over 1,100 people affected by sarcoma who told us about the anxiety and toll on wellbeing that a diagnosis has on a patient and their loved ones.  Getting the right information at the right time can make a big difference to mental health. It can help people who have been diagnosed with sarcoma to make better informed decisions about their treatment, prepare better for treatment, and help them cope with their mental wellbeing at such a difficult time.

* Not her real name. The interviewee asked not to have her real name used. Some dates and details have also been changed. 

The full report, Impact of Sarcoma: The National Sarcoma Survey 2020 is available now.

Find out more about policy at Sarcoma UK including our pledge to push for better access to the appropriate psychological support for sarcoma patients and their carers.