Life after childhood cancer: My dual roles as a researcher and survivor

September is Childhood Cancer Awareness Month, a campaign which has been pleasingly growing rapidly in the past few years. And it is badly needed. Not only for the 20 per cent of children in developed countries who still do not survive their cancer long-term, but also for survivors who are at risk of long-term treatment related side effects.  

I am a post-doctoral fellow in Dr. Uri Tabori’s lab in the Genetics and Genome Biology Program at SickKids, focusing on biallelic mismatch repair deficiency (bMMRD), a rare paediatric cancer predisposition syndrome. I’m also in the reasonably unusual position of being a survivor of childhood cancer, having had leukemia when I was eight years old.  

My previous post-doctoral work has involved looking at a rare side effect of childhood leukemia treatment – stroke-like syndrome, which I experienced myself when I was in treatment. I had gone to bed one night when I was in hospital and woke up the next morning paralyzed down my left side. A few years ago, I was talking to my mum about that experience and she asked if anyone had figured out why stroke-like syndrome occurs yet. I did a bit of reading and found it to still be somewhat of a mystery, even two decades after I had experienced it. I embarked on a couple of research projects, one with a mostly clinical focus, exploring whether drug interactions might be responsible for neurotoxicity and another using stem-cell derived neural cells to model what happens to them when they are exposed to methotrexate, a chemotherapy drug that is commonly used to treat leukemia and other cancers.  

Last month, I was privileged to travel to TED Global in Tanzania and give a TED Talk on cancer survivorship as one of 20 TEDGlobal 2017 fellows. I highlighted the growing number of cancer survivors in the world and the minimal, yet rapidly growing focus on treatment-related, long-term side effects in the research and medical communities. I also advocated for survivors, researchers and medical professionals to work together to talk about survivorship and research that is important to them.

I was also lucky to be able to visit the children’s cancer ward in Muhimbili National Hospital in Dar Es Salaam, the capital of Tanzania. It was opened in 2012 and is the only paediatric cancer ward in the whole country currently, a striking fact considering that the population of Tanzania is 56 million people. The team there is achieving incredible things with limited resources and it was both a humbling and inspiring experience to be able to visit the hospital and meet staff, patients and parents. Although I have always considered myself a scientist first and foremost and childhood cancer survivor second, I am proud to be able to combine both my experience and profession to advocate for the childhood cancer survivor community. I hope that conversations between researchers, survivors and medical professionals increasingly occur to shape the future of survivorship and to work towards giving survivors long, happy and healthy lives.

Dr. Victoria Forster is a post-doctoral fellow in Genetics & Genome Biology at SickKids.