Stephanie Hermsen-19

I was nine months old in December 1976 when my mother noticed a white spot in my eye. We were sent to see specialists at Princess Margaret Hospital in Toronto. I was later diagnosed with a rare form of eye cancer, called retinoblastoma. This type of cancer causes malignant tumours in the light-sensitive lining of the eye or retina.

I spent the next eight months in hospital receiving chemotherapy, radiation and cryotherapy (a surgical procedure that uses extremely cold or freezing temperatures to destroy abnormal tissue). Although treatment was successful in my left eye, in the end, my right eye needed to be removed. I was later fitted with a prosthetic and over the years I returned to Toronto for regular check-ups with specialists.

As an adult, I learned about advances in understanding retinoblastoma genetics done by two Canadian Cancer Society-funded researchers. Dr. Brenda Gallie and Dr. Helen Chan developed a test that indicates the presence of the retinoblastoma-causing gene. The hereditary form of retinoblastoma is caused by a mutation in the RB1 gene. I was tested and learned that I carry the mutated RB1 gene, so there is a 50% chance that I could pass on retinoblastoma to my children.

In 2009, my husband John and I were expecting our first child. Thanks to work of Drs. Gallie and Chan, I knew that we would be able to know sooner rather than later if the baby had cancer. My husband and I met with our genetic counsellor and discussed our options for early detection. I was 33 weeks pregnant when I had an amniocentesis which determined my unborn baby also had the gene.

Our son, Liam was four months old when a tumour was found in his left eye. Treatment for retinoblastoma has come a long way since I was a child. Liam had three laser treatments which successfully treated the tumour. A second tumour in his right eye was found two weeks before his first birthday. This tumour was treated with cryotherapy. Liam has had no other tumours appear. He has 20/20 vision and has been cancer free since July 2010.

Retinoblastoma mostly occurs in children. People with hereditary retinoblastoma are at an increased risk of developing other cancers. In February 2012, I was diagnosed with melanoma skin cancer but because it was diagnosed at the earliest stage, it was removed quickly and I am now cancer-free.

Thanks to the incredible progress in retinoblastoma research made possible by Canadian Cancer Society funding, Liam didn’t have to go through what I did. I’m much less scared of what the future holds for him. Cancer will always be a part of our lives, but it will never control it.