In 2019, I was living my best life. At 39 years old, I savored the beautiful chaos of raising a family while pursuing my passion for teaching. With a five-year-old, a two-year-old, and another on the way, life was bustling with joy and anticipation. Little did I know, a storm was brewing on the horizon, ready to challenge everything I thought I knew about life’s unpredictability. In a sudden twist of fate, my world turned upside down when faced with an unexpected adversary: Inflammatory Breast Cancer (IBC). This is the story of resilience, hope, and ultimately, the birth of a powerful mission to support others facing this rare and aggressive form of cancer.
It began innocently enough during my pregnancy. My right breast felt heavy and swollen, but I dismissed it as a normal part of being pregnant, attributing it to my recent nursing experience with my two-year-old. As weeks passed, the discomfort intensified, accompanied by a troubling thickening of the skin around my nipple. Concerned, I turned to my trusted midwives, hopeful that they could provide clarity and reassurance.
Their initial examinations yielded no cause for alarm. With their guidance, I learned how to perform a proper breast exam, and they reassured me that since there was no lump, it definitely wasn’t cancer. They even took the time to explain what a cancerous lump would feel like, instilling a sense of confidence that eased my concerns. Relieved, I continued navigating the discomfort, convinced it was a temporary nuisance rather than a sinister threat.
But fate had other plans. A few weeks later, a telltale sign caught my attention as I stepped out of the shower – the peau d’orange texture on my right breast. My heart sank as I recalled the ominous association with breast cancer. I reached out to my doctor, only to find that he was away on vacation. Instead, I saw the nurse practitioner, who echoed the sentiment that I was too young to have cancer and assured me that since there was no lump, it couldn’t possibly be cancer. She ordered an ultrasound, which returned abnormal results, attributing them to my dense breast tissue and pregnancy. She advised repeating the ultrasound after the baby was born.
Despite the overwhelming joy sparked by my baby girl’s arrival, the relentless symptoms persisted. Her refusal to nurse on my right side only intensified the agony I was already enduring. Treatment for mastitis proved futile, leaving me once again seeking answers from my family doctor, desperately hoping for clarity or some respite from the pain. This visit yielded similar reassurances. “There is literally less than a 3 percent chance that this could be cancer,” he confidently stated, before referring me to a breast surgeon to “ease my mind”.
Confident in the opinions of my trusted healthcare providers, I went to that appointment with the breast surgeon for what I believed would be a routine consultation. It was there, in the stark reality of her office, that the truth could no longer be denied. With a single glance, she confirmed my worst fears – cancer stared back at me from her eyes, shattering the illusion of safety I had desperately clung to.
A skin punch biopsy confirmed the diagnosis of Inflammatory Breast Cancer. The news was a crushing blow, compounded by the heartbreaking realization that I had to abruptly stop breastfeeding my newborn daughter to immediately commence treatment. Facing the daunting statistics associated with IBC, the gravity of my situation threatened to engulf me, suffocating any semblance of hope. Yet, amidst the darkness, a glimmer of light emerged when I met my oncologist. Squeezing my husband’s hand, tears streaming down my face I quietly asked if I could survive this. She turned to face me and said “Yes. YES – you can survive this. Don’t consider the statistics. Don’t read too much online, it is all outdated. You are not a statistic.” Her words echoed in my mind, and I decided right then and there that I would not let fear dictate my destiny.
Armed with the fierce support of my loved ones, I was determined to do everything in my power to defy the statistics and be there for my family. In the midst of treatment, Covid shut the world down. There were many challenges and setbacks, but through each hurdle, I learned to cherish life’s precious moments and embrace a newfound sense of gratitude. I learned to find solace in the smallest victories. With each needle prick, each scan and each treatment, I discovered an inner strength I never knew existed.
Throughout all of this, I searched for connection and support from someone – anyone who had what I had, eventually finding a lifeline in an online community created by Terry Arnold, founder of the IBC Network in the US. Through the support of fellow IBC sisters and guidance from the IBC Network, I found a community that truly understood my struggles and offered not only a sense of hope, but also an education about IBC, the standard of care and the impact of IBC research.
I consider myself lucky that my amazing medical team followed the international standard of care for IBC treatment consisting of chemotherapy, surgery, and radiation. As I’ve come to learn, not everyone with IBC is that fortunate and there can be dire consequences for those who do not receive the standard of care. I know of many women who, unfortunately did not receive the proper care, whose symptoms were also dismissed, women who were misdiagnosed or had to fight for a timely diagnosis.
Inspired by the work the IBC Network was doing, I reached out to Terry Arnold who recognized and confirmed that there has been a need for a support network in Canada for many years, but nobody had been willing to head it up. Driven by a desire to make a difference for Canadians with IBC, I embarked on a mission to establish the IBC Network Foundation Canada. Founded in late 2023, our goal is to fund life saving IBC research, drive education and empower Canadians with knowledge and hope, ensuring that no one faces this diagnosis alone. Through initiatives like our Facebook support group and plans for future advocacy and research funding, we are poised to make a meaningful impact towards eradicating this devastating disease.
As I reflect on the past 4 years, I am humbled by the resilience of the human spirit and the power of community in times of adversity. My days are still filled with beautiful chaos and my journey with IBC is far from over, but with each step forward, I am reminded of the countless lives touched by this disease. Though the scars may never fully fade, they serve as a reminder of the strength that lies within each of us. With each passing day, I am filled with a renewed sense of purpose, determined to use my experience to make a difference in the lives of others facing this formidable foe.
Through the IBC Network Foundation Canada, I am committed to illuminating a path of hope and healing for all those who walk this challenging road with me.
Together, we CAN light the way towards a brighter future for those affected by Inflammatory Breast Cancer in Canada and beyond! And as my dear friend always says, “Hope Always!”
