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Real Voices: Getting through cancer as a young person

Perri during treatment

Perri was just 21 when she was diagnosed with a rare form of breast cancer. She received treatment during lockdown in 2020, and ended up having a mastectomy. In this week’s Real Voices, Perri tells her story and gives advice to other young people on how to get through cancer treatment at a young age. 

I was diagnosed during lockdown in 2020. I was working and exercising quite a lot so I was losing weight quickly, but didn’t think anything of it, and I had no other symptoms. I was on holiday in July 2020 when I found a lump in my breast, I had never felt it before but it was pretty big. I went to get it checked out as soon as possible. Obviously at the time I was unable to go and have an appointment in person, but luckily for me the GP (even though I was only 21 and breast lumps are quite normal at this age) decided to refer me immediately to a breast clinic in Leeds. I was seen very quickly, so the window of time between finding the lump and getting diagnosed was a month. It was all quite shocking, as I didn’t feel ill. I was diagnosed with a rare form of breast cancer called rhabdomyosarcoma, which is especially rare for young people. Originally the doctor had told me that they thought it was a non-cancerous hormonal lump, as young people get these a lot between the ages of 16 to 25. When I went to the appointment for my results, I left my partner in the waiting room because I didn’t think I would get any bad news. I immediately knew something was wrong when I walked into the room and there were two doctors and about five nurses there. The words “You have cancer” weren’t actually spoken, they just described the lump as “cancerous” and I was completely shocked. It was like an out-of-body experience. But I’m lucky that I was diagnosed so quickly, it was a whirlwind. 

I wasn’t given many options for treatment, as the main element of treatment for me was going to be chemotherapy. Surgery wasn’t really mentioned at the time, and the treatment plan wasn’t explained to me in too much detail, Intense chemotherapy were the words I remember being used. That was the first conversation I had with my clinical nurse specialist who saw me right through from the beginning of treatment to the end. I had to have a lot of scans initially after diagnosis because it was important to determine if the cancer had spread anywhere else. Luckily for me it was localised to my breast so we’d caught it early. Sarcomas are known to grow fast so we immediately began treatment. The treatment plan was to last a year, starting with seven months of intense chemo. The rest of it would be slightly smaller doses of chemo for maintenance, with radiotherapy alongside. 

Receiving treatment was like being in a constant state of fight or flight mode, I think it was the adrenaline that kept my body going through that time. I didn’t understand my cancer that well, I was given a few resources to try and understand more. As soon as I knew the extent of the rarity of my form of cancer, and also just how scary and aggressive it could be, I switched off a bit. I just wanted to focus on getting better. They did let me know that it was treatable, and they would be treating to cure. The fact that it was caught early was also a blessing, as once sarcomas begin to spread the chances of survival decrease, as with all cancers. For me, it was a case of taking it step by step, or cycle by cycle, as chemo is done in cycles. It was helpful for me to know exactly how many cycles I was going to have. I think I had my mind set on the idea that it was only temporary and it would be over. The treatment started well, but unfortunately after the second cycle I contracted sepsis so I was in hospital for around three weeks. It was touch and go at one point, as the antibiotics weren’t working. I had a severe allergic reaction to penicillin, which I didn’t realise I was allergic to. I had neutropenic sepsis which is when the chemo makes your body shutdown and you’re incredibly vulnerable to infections. I couldn’t have any visitors and had to isolate on the ward. That second cycle was really difficult and I had a long period of trying to find my feet whilst recovering from the sepsis. It definitely set my confidence back a bit, and made me worry. I panicked about what would happen further down the line, if that had happened during only my second cycle. It was probably the most difficult period of my journey, as I had to see a lot of different doctors and it was clear that everyone was worried about me. My clinical nurse specialist said it was one of the most difficult things she’s ever had to deal with in her thirty year career. 

Fortunately the next few cycle of chemotherapy did go according to plan. I started to get a lot better. I was diagnosed in August 2020, and by the time Christmas rolled around I started to find my feet with it. I was then told that I would have to have a mastectomy. The chemo was going well, and the lump had mostly disintegrated but in order to prevent it from coming back they wanted to perform the surgery. They said it was my choice, but they very strongly recommended the surgery. I instantly said yes. I don’t think I ever actually processed it, as I just thought “I need to do this, and it needs to be done now.” It all happened really quickly, from being told I would be having the surgery and it happening was a period of just two weeks. The recovery process was long, and then I had to have radiotherapy. So it was one thing after another, you have the chemo, then the surgery alongside the chemo, then the surgery recovery alongside chemo alongside radiotherapy. It was a lot. In January I started to feel better, and could see the light at the end of the tunnel. 

It was a weird time to be getting treated for cancer. The whole world was in lockdown, so it wasn’t as if I felt like I was missing out on normal life, because life wasn’t normal for anyone. It was difficult, because the resources available to me were even more limited than usual. The NHS were under even more pressure. I really struggled mentally on a daily basis. I was trying desperately to stay positive for my friends and family, and I was putting on a front for social media to raise awareness and show people that I can be strong. Really it was a completely different story behind closed doors, and I had good days and bad days. When you have your bad days they’re really bad. I was just taking each day as it came, and focusing on what was coming next. A huge turning point was when I was able to drive myself to radiotherapy as it gave me a feeling of having independence back. Lockdown was starting to ease, and the chemo I was on was still intense but not as intense as before. I had a lot more control and taking myself to appointments got me out and gave me a purpose. I actually looked forward to going to radiotherapy which isn’t something you hear very often. But it gave me more of a routine and structure. 

Nowadays I’m two years in remission, and I’ve just had another clear scan (as I have to get scans every six months). The chances of the cancer returning are quite high within the first two years, but after that the likelihood of it coming back drops significantly. I went back to work about eighteen months ago, which I’ve really enjoyed. I’m still finding my feet in remission, but I’ve been totally off treatment for eighteen months. It’s cliched but time is the greatest healer. The first year after finishing treatment I really struggled, both physically and mentally. Strangely, I’ve found it more difficult after treatment than when I was on it. When you’re undergoing treatment, you’re pumped with so much adrenaline that you don’t process it whilst you’re going through it. Once you finish treatment, you’re left to process everything that you just went through. There is no returning to normal. I really relied on counselling services and on charities such as Maggie’s and Teenage Cancer Trust to support me during that period. I struggled to find who I was again, I looked completely different to how I did before cancer. It’s like there’s three different people; the person you were before treatment, the person you were during, and the person you are after treatment. I am completely different now. An experience like mine really puts things into perspective and makes you realise what’s important. It makes you understand that you shouldn’t worry about the little things anymore, like what people think of you. Ultimately, what you go through when you endure something like this is a testament to your strength and character. I think experiences like this inform the choices we make for the rest of our lives. I’m much better these days and I think my purpose now is to help others going through cancer and to raise awareness. Cancer in young people is really difficult, and we’re a specific age group which has different needs to other age groups. Life after cancer does exist, and I think for young people that it’s hard to realise that because you’re so young and you feel as if you’ve had your youth taken away. It’s important for young people to know that they are supported and that there are resources available. 

The advice that I would give to any young people diagnosed with cancer is to not compare yourself to anyone else. Don’t be hard on yourself, there’s only one of you and that’s what gives you power. Just because your journey looks a bit different to someone else’s, that doesn’t mean your experience is any less important. It’s very brave to share your story, and the way you create your own narrative and portray your story is up to you. The whole “toxic positivity” thing is a very real issue for younger people who are ill, there’s a lot of messages about “being strong” and “staying positive” and it’s easier said than done. Young people should know that they don’t need to be strong and independent all the time when dealing with cancer, that there is support available. Also don’t ever put pressure on yourself, you will be a different person when you finish treatment. 

The main thing is don’t be afraid to use the resources out there. Teenage Cancer Trust is an amazing charity which does so much for young people. I felt so isolated during my treatment, I felt like nobody in the world would relate to what I was going through. Of course nobody was experiencing the exact thing I was, but to know how many young people out there were going through similar things was really comforting. Try to push yourself out of your comfort zone and reach out to someone. You never know what will come of it.