Alex Brownsdon, 40, is a research nurse and children's cancer survivor. She tells us about the impact of her cancer, the value of peer support and the importance of research.
I was diagnosed with acute lymphoblastic leukaemia (ALL) in 1987, when I was four years old, after a GP recognised the symptoms and referred me for further checks. The treatment I received was part of a clinical trial for children with ALL at Bristol Children’s Hospital. In 1989, I relapsed while on maintenance treatment and proceeded to have a bone marrow transplant in 1990, when I was seven, and have been in remission since.
The legacy of my cancer and its treatment
Though I’ve not had any other cancers since entering remission, the burden of disease is always in the background. For example, when I was 17, I was at a fairground with friends, and, while we were on the dodgems, I banged my head. Afterwards, I started getting migraines. I went to the GP, and, because of my history, an MRI scan was recommended. The scan picked up a meningioma, which is a brain tumour. This was thought to have stemmed from the radiotherapy that I had when I was younger and though it wasn’t cancerous, the tumour did need to come out. Surgery for this took place in 2000 and I have been monitored for meningioma recurrence ever since.
Following a surveillance scan about four years later, a further meningioma was seen. However, due to its presentation, this did not require removal for another five years. Two more meningiomas were discovered a couple of years ago and I had surgery for one of them in 2022. Although these brain tumours haven't been cancerous, due to the high likelihood of them being caused by the radiotherapy I had as a child, they are taken very seriously, and I’ll always be under surveillance for them.
There are other health issues related to the childhood cancer treatment, in particular the conditioning received before my bone marrow transplant including radiotherapy to my whole body known as total body irradiation (TBI). This basically helped to destroy the bone marrow before the new stem cells were given. This, among other things, has affected my hormones and bone density.
One of the biggest things I was told about at the time of treatment, was the impact on my fertility. This was made very clear to me and, even as a seven-year-old, I understood what it meant. However, one of the things I wasn't so aware of, or maybe just didn't pick up on, was the impact my treatment would have on my growth. I'm quite small and have stayed the same height since I was about 12, and I think this is something that I probably just wasn't so aware of at the time.
The impact on my life
The long-term effects of childhood cancer and its treatment - called ‘late effects’ can have an impact in many different ways. I sometimes couldn’t carry on with certain things and it felt a bit like being punished for something that wasn’t my fault. For example, I’ve had studies and education interrupted and have missed out on job roles I wanted because I was recovering from neurosurgery at the time.
Everything and everyone else seemed to carry on as normal, and this disruption to life felt unfair. I can remember feeling quite angry, frustrated and a little bit cheated at times.
Having cancer as a child can mean that you’re at a higher risk of developing secondary cancers or other side effects further down the line. I have been part of the NHS breast cancer screening service for over 12 years because I am at a higher risk of developing this type of cancer due to everything that has happened before. People who were diagnosed and treated 30 or 40 years ago could be viewed as trailblazers in terms of cancer survival, but many are also carrying this burden. The late effects experienced by childhood cancer survivors and their ongoing impact also highlights the importance of continuing research into the treatment of children’s cancers and its longer-term legacy.
The importance of research
As a research nurse and survivor of childhood cancer, I fully appreciate the importance of research and I may not even be here without it. Research underpins the development of new treatments as well as the improvement of existing ones.
Owing to research, there have been significant advances in the treatment of childhood cancer. For ALL, for example, the five-year survival rate has increased - when I was diagnosed, this was about 70%, and now it’s over 90%.
However, there are still lots of questions that haven’t been answered yet. There’s a lot we do now know, but still a lot we don’t. Certainly, with late effects, we’re still learning a huge amount. It's often new territory, but there is research happening, such as that funded by CCLG, that’s addressing the needs of survivors and those living with late effects.
Using my experiences to help others
Both as a survivor and a nurse, I’m able to help others, and I’m passionate about doing what I can to support young people and their families facing a children’s cancer diagnosis. That’s why I’ve been involved with supporting two aspects of CCLG’s work.
Firstly, I help to review its information resources. Involving people who have had experience of childhood cancer is crucial to making sure that the information we’re giving to children and their families is as helpful, reliable and trustworthy as possible.
There’s so much information available and we want to make sure that what people are receiving is meaningful. If people are struggling with this awful experience, and being overwhelmed by information, it’s vital that things are made as easy as possible to take in, and that what they’re able to digest, is accurate.
I was also involved as a patient representative in the Children’s Cancer Priority Setting Partnership (PSP). This was a three-year project which identified the top 10 research priorities in children’s cancer, according to patients and their families, survivors and healthcare professionals. I wanted to be involved with the PSP because of the exciting opportunity to contribute towards future research topics and to help improve the experiences of young people affected by cancer.
CCLG’s ‘Living beyond cancer’ resources for life after treatment
These resources help young people by promoting supported self-management, helping them to understand the relevant potential risks and therefore, make informed choices about how to best manage ongoing needs, conditions and care. Having timely access to relevant late effects resources would have helped me feel more informed, prepared for and aware of the potential risks and empowered to address them.
Connecting with other children’s cancer survivors
From my own experience, the importance of peer support for children’s cancer survivors should not be underestimated. Among peers, there’s an unspoken level of understanding and acceptance, and sometimes all that’s needed is being in a room with people that have these experiences in common.
I’m still friends, 30 years later, with a group who were all treated at the same cancer centre. There’s four of us, who are very close. When I was diagnosed with the tumours last year, the first thing I did was put a note on our Whatsapp group.
Immediately, I had this network, where everyone just got what I was going through and each time something happens, we will message and support each other. Of course, everyone’s journey is a very personal and individual experience, but for me, having a group like this, who are all there for each other, is invaluable.
You learn from each other and help each other make sense of things. These networks provide reassurance that you’re not alone. Without them, I think it can become quite isolating. There are lots of charities that help bring patients and survivors together, for events and holidays and social media can also help in making new connections.
My advice to others
If something doesn’t feel right, then it probably isn’t. Don’t be scared to question things, keep pushing for answers and don’t be afraid to speak up.
Talk to someone. Engage with peer support networks and connect with others going through similar experiences, the chances are, you won’t be the only one going through this.
Create a better future for young people with cancer
You can help to fund more research into better, kinder treatments for childhood cancer. You can donate online, text CCLG to 70085 to donate £3, or get involved in a fundraising event.