I was diagnosed with cancer at age 36. My life will never be the same

It’s a well-known statistic that approximately 50 per cent of Canadians will be diagnosed with cancer in their lifetime. I knew there was a reasonable chance that it could happen to me.

What I didn’t know was that my time would come so soon.

In 2019, at the age of 36, I was diagnosed with Stage 3 invasive ductal carcinoma — a.k.a. locally advanced breast cancer.

My children were one and three years old when I was blindsided with the diagnosis. I say blindsided because, up until the day my family doctor called to give me the results of my biopsy, everyone had assured me “it’s probably nothing. You’re too young to be diagnosed with cancer.”

Technically, they weren’t wrong: breast cancer in women under the age of 40 is rare. Only about seven per cent of those diagnosed with breast cancer have yet to clear their 30s.

Yet, there I was. Diagnosed with an aggressive cancer just as I was starting my young family, making strides in my career and crafting plans for the future. I didn’t have time for this inconvenient, life-threatening bomb that was suddenly dropped into my lap.

But that’s the thing about cancer — it doesn’t care how old you are. It doesn’t give a s**t about your plans or goals. And it doesn’t discriminate.

Immediately, I was thrown into a medical system that wasn’t designed for someone my age. There was no hospital daycare to help mind my children, I had to make immediate and distressing decisions about my fertility, hair and breasts, and the cancer support groups offered through my hospital were (by no fault of their own) definitely where I felt the loneliest as the youngest person in the room. It was depressing and isolating.

I remember being so desperate for someone I could relate to in the days after my diagnosis, I followed a young woman around the grocery store who had the telltale signs of losing her hair from chemo. Her head was freshly shaved and I could see little bald patches starting to appear in places. I never mustered up the courage to talk to her, but even being in her orbit for a short period of time made me feel a tiny bit better. Just knowing that someone else my age was going through the same thing was a salve.

Looking back, that behaviour seems a bit creepy, but it highlights how rare cancer is in young adults. I was receiving an avalanche of medical information and trying to process what was happening to my life, but I was most fixated on finding a friend who also had cancer — someone I could talk to, someone who would really understand.

A late diagnosis

Cancer in young adults is often diagnosed at later stages than those in older cohorts for a number of reasons. Young adults are typically healthy, meaning they might be less likely to visit a doctor until they really need to. Many young adults do not have a regular doctor. And when they do go see one, cancer is not high on the list of investigated diseases because cancer is not common in people under 40.

My diagnosis followed the latter pattern. It took a few months for anyone to consider that the lump in my breast was something other than blocked milk ducts from breastfeeding my son. I try not to dabble too much in the “what ifs” of my diagnosis, but I can’t help but wonder how long the cancer was growing inside me and if my life expectancy would be better had someone investigated earlier.

There was pressure to get me into a chemo chair as fast as possible, as my five-centimetre tumour was growing quickly thanks to an aggressive cancer subtype. The goal was to shrink the tumour with eight cycles of chemo before having surgery to remove the cancerous area and affected lymph nodes, and then blast it with daily radiation for six weeks.

Six months after finishing my initial treatments, coinciding with the beginning of the COVID-19 pandemic, I would be diagnosed with another form of breast cancer — an extremely rare type had existed alongside my original tumour but was undiagnosed, again, because the doctors thought I was “too young” for this particular type of cancer. I dodged the chemo chair on my second dance with the disease, luckily, but I was left with only one breast, heightened post-traumatic stress disorder, and a stronger feeling that my body, not to mention the Canadian medical system, had failed me.

The distress of surviving cancer

The whole time I was being treated for cancer, I couldn’t wait to get to the “finish line,” the day that I finally crossed off all the chemo and surgeries, the 33 rounds of daily radiation, the weekly blood work, the scans, the additional five months of targeted therapy.

What I didn’t know was living with cancer in my body would be less distressing than living life as a cancer survivor. My hair grew back, signalling to the outside world that I was “better,” but that couldn’t be further from the truth. I will never fully shed this disease, no matter how long I remain in remission.

I recently came across a quote on Instagram that sums up my post-cancer life in the most heart-wrenching way: “Just because I’m living disease-free doesn’t mean I’m free of this disease.” There’s not a day that goes by that I don’t think about cancer, worry that it’s going to come back, try to quell intrusive thoughts that I might not live to grow old with my husband and watch our children grow up.

Helping others while healing myself

I have done my very best to be an advocate for young cancer patients, which, I have learned, is a double-edged sword. I want nothing more than to help other young breast cancer patients feel less alone. I lend my voice and time to a host of organizations and fundraisers, I create opportunities for young cancer survivors to connect, and I share openly and with vulnerability on social media.

When I was first diagnosed with breast cancer I happened to stumble across a group of other young women in my city who were going through the same ordeal. The “Pink Ladies” (now the Southern Alberta Breasties) would regularly meet for coffee, walks and chats, and they invited me into their cancer club with open arms.

That group provided, and continues to provide, a lifeline for me. A cancer diagnosis early in life is isolating, and the vast majority of my peers have never had to face their own mortality in such an abrupt way, nor deal with the aftermath of such a traumatic life event. The Breasties get it. They speak the language of cancer and know that part of my heart.

Over the past three years, our members have worked tirelessly to catch other young women coming into the cancer system, offering them a soft place to land surrounded by other people who have walked the same path. When I was welcomed into the group there were about 12 members. Now there are 200.

The founding member of the Breasties, a beautiful young woman by the name of Marloes, passed away from metastatic breast cancer last summer. I would visit with her often while she was dying, watching her eventually become deaf from the tumours growing in her brain. She never complained, never felt sorry for herself. She understood how precious her time on Earth was, and she milked every beautiful moment from it until she couldn’t anymore.

One of Marloes’ dying wishes was that the Breasties would continue on without her, that we would always continue to seek out other young women and make sure they had cancer survivors in their corner. She made me promise that the group would continue and I will never go back on that promise.

But making that promise means I’m now the unofficial go-to for the group. Every week there’s a newly diagnosed woman sliding into my direct messages, showing an agonizing amount of vulnerability while they desperately search for someone who understands and can help carry their pain.

This is my double-edged sword. It’s heartbreaking work and I relive my own diagnosis each time I learn of another woman who has this hideous disease. My therapist suggested that I back away from the role from time to time, and I do, but I never want any young woman to feel a fraction of the pain and fear I felt in the weeks after my diagnosis. While it’s extremely fulfilling to help others in this way, it’s a stark reminder that the cancer system is severely lacking in its setup to support those affected by a diagnosis at a young age.

A series exploring young cancer

My time in Cancerland, as I’ve been known to call it, has opened my eyes to the unique and frustrating challenges young adults face in the wake of cancer. I’ve shared my story many times, but it’s been a goal to create an in-depth series exploring some of these challenges.

The launch of this series coincides with the beginning of Breast Cancer Awareness month. To outsiders, it’s a sparkly and energetic month dedicated to what has somehow been framed as “the good type of cancer.” To many breast cancer survivors, it’s a stark reminder of a cancer that devastates families, disfigures bodies and steals too many good people. No kind of cancer is “fun,” and no kind of cancer is a “good” kind of cancer.

Against All Odds: Young Canadians & Cancer is an examination of the barriers young cancer patients deal with while accessing life-saving therapies and treatments. It’s also a look into the difficulties many young Canadians face following a cancer diagnosis: the impact on mental health, its effect on families and caretakers and the disappointing and disfiguring changes that often fall on undeserving people.

And while cancer is horrible, this series is also a celebration of those young people who are making the most of a bad situation. The people who fight back at their disease with humour and grace, as well as the organizations who are doing wonderful work to change the way young Canadians navigate cancer.

I would be remiss not to mention that I have always been cognizant and grateful for my own relative privilege. I am a white, cisgender woman who’s had the means and support to take as much time as I needed to recover and heal. I live in a major Canadian city, close to Calgary’s cancer centre and other medical facilities. I had access to unlimited therapy, a decent insurance plan and an amazing support system. For the most part, I received excellent care and my treatment (as far as I know) was successful.

Many people aren’t afforded the same, and with that in mind, we will hear from marginalized and racialized cancer patients and their families, as well as those who don’t live near major cancer hubs. Our series will speak to people across the country with different types of cancer, both men and women, at different stages.

Cancer is not a monolithic illness, but rather a series of separate and varying diseases that are often lumped together. Cancer, and the way it moves and multiplies in each body, is complex and unique. For this reason, no two cancer diagnoses are the same and every person deals with and manages their cancer diagnosis differently.

But there are common threads that almost all those who are diagnosed with cancer as a young adult can relate to: the fear and the unknown, the search for community and meaning in a diagnosis, the guilt in watching this disease take the lives of others, and trying to pick up the pieces of a life and fit them back together while living in a body that has betrayed you.

My hope is that this series shines a light on some of the systemic issues and barriers young adults face when dealing with a cancer diagnosis. I also hope this series highlights some of the Canadian organizations that are doing excellent work in the young adult cancer space.

But, ultimately, if even one person feels less alone after reading this series, then I consider it a success.

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‘Against All Odds: Young Canadians & Cancer’ is a biweekly ongoing Global News series looking at the realities young adults face when they receive a cancer diagnosis.

Examining issues like institutional and familial support, medicine and accessibility, any roadblocks as well as positive developments in the space, the series shines a light on what it’s like to deal with the life-changing disease.