When Jessica Rousseau joined our team in early 2021, we had no idea what kind of challenges she was facing in her personal life. As with any relationship, it takes time to get to know people and gradually earn their trust, and it wasn’t until a few months into her time with us that we began to learn about her family history.

At first, we found out that she had lost her mother to cancer when she was a teenager (as if being a teenager isn’t hard enough), and we learned about the prevalence of cancer on her mom’s side of the family. Eventually she confided to us that she had recently undergone some genetic testing out of concern for her own predisposition to cancer.

The results from those tests, and the gravity of the impact they would have on her life, and the lives of those around her, have led her to choose to share her story, not only with us, but with all of you as well.

We admire Jessica for her strength and courage to face this challenge head-on. It’s a deeply moving story and we hope that by sharing it far and wide, it will educate and inspire many others as well.

Jessica, thank you for doing this interview with us.

Mark and Catherine Broady

Most children first encounter grief through the loss of a grandparent or extended family member. My non-typical journey with grief began with my mother. It was the first time in my life that the word “cancer” really impacted me in a personal way. It weaved its way into my world, loomed over my family like a dark cloud, and shook us to our very core. I was 12 years old when she was first diagnosed with breast cancer, and a few tumultuous years later, as hope and despair interchangeably ebbed and flowed, she lost her fight. She was only 40 years old. I was 14, and my sister was 4.

While my mom was sick, I found out that her maternal aunt (my great aunt), had been a breast cancer survivor. And some years later, I found out that my maternal grandfather was a prostate cancer survivor. It didn’t take long for me to conclude that cancer was the common denominator on my mom’s side of the family.

When cancer is so close to you and flips your life upside down, you can’t help but wonder if you’ll also be destined to develop the disease. My mother’s story, and the fact that she was so young when she died, was a great cause of concern for the various family doctors who followed me throughout my 20s and 30s, in both Calgary and Montreal. They advocated very strongly for me to be screened on a yearly basis, via mammograms, ultrasounds and eventually MRIs. But the pushback I received from the screening clinics was gut-wrenching. “You’re too young for this,” “You’re taking up valuable screening time for someone who really needs it,” “Why on earth do you need these tests; you should be at least 50,” were just some of the most common comments I would receive. Despite them being aware of my family history, I would only grudgingly be given an appointment, often accompanied by signs of annoyance and impatient sighs, even though I had a referral from my doctor. 

It became very apparent to me that screening women as early as 20 years old was not common practice, nor was it viewed as a proactive preventive method as much as a nuisance. Yet, women all over the world as young as 18 are being diagnosed with breast cancer and ovarian cancer. Now that I’m older, the pushback has tapered off, but I will never forget how awful I was made to feel for pursuing adequate screening as a young woman with a family history of aggressive cancer.

In my 30s, I learned that genetic testing for the BRCA mutation was available to me, should I want to find out if I was a carrier. I waited a few years, got married and had my twins, and last year, opted to get tested. Through a simple blood test, I found out after a short couple of months that I was indeed a carrier of the BRCA1 mutation. This meant that I had the most elevated chance of the two mutations (BRCA1 and BRCA2) to develop breast and/or ovarian cancer in my lifetime, with the odds of developing ovarian cancer increasing even more after the age of 40. Being a carrier of the BRCA1 mutation also means that my children have a 50% chance of carrying it. For my son, that means a higher chance of developing prostate and/or breast cancer (yes, even men can develop breast cancer through the small amount of tissue they have). My genetic counsellor explained to me what my options for cancer prevention were, and with my consent, I was transferred to the care of a breast cancer oncologist and a gynecologist to discuss ongoing screening and preventive surgeries.

The minute I entered the Stroll Family Cancer Prevention Centre, at the Jewish General Hospital, I knew that I would be opting for two surgeries: a mastectomy with reconstructive surgery and an oophorectomy (removal of the ovaries). I had many questions about these operations and their side effects and implications, but my mind was made up. Doing them would reduce my 85% risk of developing breast cancer to 1%, and my 60% chance of developing ovarian cancer to less than 2%.

For me personally, being proactive with the preventive surgeries was paramount. While I was stricken with grief when I heard my mutation diagnosis, I clearly knew that doing everything I could within my control was the only option. I did it for myself, for my young children and husband, and for my mother and all the other women who weren’t given a chance to take action. 

Thanks to my great-aunt, the genetic testing was available to all family members on my maternal side. It is important to know that to test for genetics, one must have a family member to benchmark against, either currently living with cancer or in remission. So, we couldn’t have done it without her getting the ball rolling. Another important thing to know is that all women have the BRCA gene. The distinction is whether you have the BRCA1 or BRCA2 mutation, which puts you at a higher risk than the rest of the female population. The genetic counsellor was incredibly insightful and was able to answer all my questions relating to genetics and statistics. Once I gave consent to further discussing my prevention options, a coordinator from the Stroll Family Cancer Prevention Centre connected me to my oncologists/surgeons, where I was then able to deep-dive into the different surgeries available to me, and so on.

From an emotional aspect, both the mastectomy and oophorectomy were accompanied by a lot of mourning and grief, which I think is completely normal. These are parts of my womanhood, parts of me that I had to say goodbye to. But just like after all life-altering events, I’ve endured, adapted, and I’ve slowly been making peace with my new reality.

From a physical aspect, the breast surgery was by far the most painful of the two. A lot of bed rest and downtime was required. The oophorectomy was much easier to navigate from a recovery perspective, but with it came an onslaught of internal shifts related to being prematurely put into menopause. Because of my age, I opted to undergo hormone replacement therapy (HRT) as a way to mitigate the menopause symptoms. This involves wearing an estrogen patch and taking progesterone daily for the next 10 years.

Since my surgeries, I’ve found support through communities, research groups and not-for-profits like Ovarian Cancer Canada. I’m a big believer in advocacy and awareness. Sharing my story and what I’ve learned along the way has been my number one coping strategy throughout all of this.

Deciding to do genetic testing is a deeply personal choice that only you can make. If you’ve found yourself ready to take that next leap, I would suggest searching genetic testing options in your city. A phone call will set you on the right track, and the genetic counsellor will walk you through the next stages. If you do find yourself testing positive for the BRCA1 or BRCA2 gene, take a few long deep breaths and know that options are available to you that don’t necessarily involve surgery. Your support system of doctors and surgeons will help you make the right choice for your personal situation.