Becky’s Story

Having first noticed a small lump on my ribs in November 2017, I was eventually diagnosed with a Desmoid tumour (also known as fibromatosis – a form of sarcoma) in July 2018.

I was at the gym when I initially noticed an asymmetry, lying face down on a machine – I could feel a slight unevenness with my body pressed against the surface. When I got home, I looked at body in a mirror, and could see a lump, which was soft to the touch, and malleable enough that it would actually disappear when prodded.

I’d spent the year getting fit for the first time in my life, and noticed lots of changes in my body during that time. I was also only 30 years old, and those two factors combined to convince me that it was just another part of the process – no body is symmetrical, and I put this difference down to my body going through another phase of adjusting to the changes I’d put it through.

The lump then disappeared, and I pretty much forgot about it, until it reappeared in March 2018. This time, I sensed that it was different. It was firmer and a little more prominent. My main concern at this point is that it was still quite small (though it is visible in a photo I have of myself wearing a bikini at the time), and I was really worried about going to the GP and having my concern brushed off due to my age. I was also incredibly busy at work, including some business travel, so I decided to wait and see what happened.

By May, the lump had got noticeably bigger, and was now sore to the touch. When I returned from my final business trip, I made an appointment to see a GP, whose response when examining me concerned me – that was when I started to worry. I’d hoped until this point that it would be something innocuous, like a lipoma or a hernia, but the GP also admitted that she wasn’t sure where to refer me to and that she’d have to check – this made me think that it was something she didn’t see often.

I was quickly sent for an ultrasound, at which point the consultant told me it was neither a hernia nor a lipoma, and referred me for a CT – now I was definitely panicking. When the CT scan also failed to provide a conclusive result, I went for a biopsy. I’ll never forget crying throughout the procedure, and how kind the consultant was about my response – I was really frightened by that point, whilst also knowing there was nothing I could do about the outcome.

Waiting for the biopsy result was one of the worst parts of the process, and made even worse by the fact that I had to seek the help of PALS (who were fantastic) in order to obtain the result. I was then told via phone that I had a Desmoid tumour, and that I was being referred to the Royal Marsden. I think this moment is familiar to many cancer patients – relief to have a definitive diagnosis, mixed with terror about what will happen next.

Not one to sit and wait patiently following this news, I tracked down the secretary of the consultant I’d been referred to, and called every day chasing my referral – I pestered my way into an initial clinic appointment, and first met my consultant in July 2018.

We got off to a difficult start – he wanted to watch and wait (which is common with Desmoids), whereas I felt that I’d already done that, albeit unintentionally. The tumour was growing, it was more prominent again than when I’d first presented at the GP, and was starting to have a slight impact on how I was able to move. The medic ultimately won the argument, and I was booked in for a repeat CT scan (which would’ve been an MRI had I not had an existing piece of metalwork in my lower spine, and a concern that it’d impact the imaging) and review in September.

It felt like a very long eight weeks, during which my mental health suffered significantly. As the tumour continued to grow, and become increasingly painful, I was worried about lots of things: how I looked; whether I’d be offered surgery and how long recovery would take; whether surgery would even be successful…

Some of my questions were answered when my consultant walked into the room in September, having seen that day’s scan and immediately announced he’d like to operate the following week. Again, I had mixed emotions – frustrated that I’d been right, and things had clearly advanced quickly; pleased to be hopefully getting the situation resolved; and concerned for what I was in for in terms of recovery.

Surgery took place in October, and again I was very emotional. I’d been through a significant surgery previously, so sort of knew what I was in for, but I’d been 18 the last time and was aware that recovery would be different aged 31. I’d done my best to stay fit in the run up to surgery, having to work around the lump in my abdomen which meant I was struggling to perform squats in particular, and also had difficulty doing things like putting socks on.

The kindness and consideration of the team taking care of me again struck me when one of the anaesthetics team reassured me that I could leave my beloved nostril piercing in, that they’d willingly just tape over it. Another strong memory is waking up in recovery, and insisting to the nurse that I wanted to get a feel for my body. “It’s going to be swollen, and there’s a dressing on,” she reminded me. “I’ll know the difference,” I insisted. She then carefully moved equipment and the sheets for me to place a hand on my body where a lump had been a few hours previously, and I got to understand that it had indeed gone.

My surgeon had to remove the entirety of my right rectus abdominis along with the tumour, and reconstructed the area using a large piece of mesh. As time has gone on, I’ve noticed how different my body is as a result – the aesthetics never bothered me, as I’d much rather be tumour-free, but you don’t quite realise the work your abs do until they’re gone. Everything from  movement to digestion is different.

I went back to the gym as soon as I could – six weeks after surgery, and the slow process of getting stronger began. At about four months post-op, I finally took a significant leap, and physical progress was on a steady upward trajectory from there – I now lift heavier than I did before surgery, have qualified as a specialist personal trainer, and am back to my beloved horse riding with no difference in my fitness.

The greatest difficulty has been the mental recovery. There’s a new awareness post-cancer, that you very much aren’t invincible, and it could either return or happen differently. Fortunately, in terms of recurrence, I’m very much considered out of the woods, but that doesn’t negate the experience altogether, nor does it offer full reassurance.

I’m incredibly grateful for every professional who helped me to get a diagnosis, and survive treatment, plus every patient who has gone before me and helped them learn, plus the researchers who continue to try and make various parts of the process better.

Becky