Hayley Henry: Facing Hereditary Cancer Risk as a Family

Pregnancy comes with a rollercoaster of emotions — joy and anticipation for the new experiences ahead, anxiety about navigating uncharted challenges and the overarching hope for a healthy baby.

Adding to all of this for Hayley Henry was the fact that there was a 50/50 chance she would pass on the neurofibromatosis (NF) gene, which resulted in her own cancer diagnosis in 2012.

“Every little piece of me knew I wanted kids, but that it came with an added risk,” says Hayley, who met her husband, Aidan, just months after finishing her cancer treatment and moving back home to Victoria.

BC Cancer’s Hereditary Cancer Program (HCP) helped alleviate a lot of our stress, says Hayley. “When we decided we wanted to try and start to have kids we were set up with a genetic counsellor at BC Cancer – Victoria who gave us all the facts and information we could ever need.”

Subsequent genetic testing, in which their twins, Hunter and Brody, both tested positive for the NF gene has armed the new parents with the knowledge and ability to plan for their future.

“I am very thankful that we found out at such an early age so that we can monitor them closely. For now, we will just watch for little signs. Once they are older, we will start scans to make sure all is well and hope for the best as not everyone with NF gets cancer.”

An $11.3 million BC Cancer Foundation campaign supporting the BC Cancer – Victoria Integrated Care and Research Pavilion — the new home of hereditary cancer care on the Island — will increase access to genetic counselling, and provide similar peace of mind, for other families with hereditary risk.

“With the new pavilion, we’ll have a dedicated space for hereditary cancer genetic counselling and risk assessment, a game-changer for both our team and patients like Hayley,” shares Jennifer Nuk, Practice Leader – Genetic Counselling, BC Cancer – Victoria. “Our goal is to provide individuals and families with the knowledge and support they need to manage their hereditary cancer risk, helping them feel empowered and informed as they navigate their health decisions.”

Hayley’s cancer journey began in 2010 with extreme back pain. A non-cancerous tumour was discovered on the nerves in her lower back (a common symptom of neurofibromatosis, a genetic condition she was born with) and Hayley underwent surgery to have it removed.

Two years later the pain returned. “Not only had the tumour grown back pretty fast but this time it was cancerous.”

Hayley was in her early 20s and living in Whistler so her mom moved from Victoria to help her make the daily commutes to Vancouver to receive radiation treatment and surgery.

“I have a pretty big scar down my back and am missing part of two of my ribs on my right side — but I am happy to say I am now 11 years cancer free.”

In addition to hereditary cancer care, Hayley is grateful more room is being made in the BC Cancer – Victoria Integrated Care and Research Pavilion for other supportive care services, such as psychiatry and patient and family counselling, as they were invaluable in supporting her and her mom.

“I know I was the one with cancer but my whole family was part of the journey, and it was just as hard on them. Having resources available not only to patients but to their support system is massive.”

“I can’t imagine what my mom went through,” adds Hayley. Watching your child deal with cancer is something I hope I never have to go through. But if I do, I am confident I will be in good hands.”