It was March 17th 2019, St Patrick’s Day–a beautiful Sunday almost spring morning in the city. My husband Robert was away at a family funeral in Jamaica. It was going to be a day just for me. As I slumbered in the morning sun, thinking about how I would spend my day I decided to do a BSE, as I often do. Little did I know that this simple, yet so important an exercise, would set me off on a journey through the Ontario medical system that I could not have imagined.
I found a lump that morning-a distinct linear lump-that wasn’t like anything that I had ever felt before. I thought well, that’s new. I resolved to call the walk-in clinic first thing Monday morning. I wasn’t too far from our house; that had been my solution to having not been able to find a GP since moving to Toronto some twelve years prior.
I saw the doctor at the clinic several days later and shared my discovery. I had to retell my story repeatedly at this clinic. Her office was overcrowded and overbooked on each visit in a province where finding primary healthcare had been an issue for as long as I can remember. Even before the lump, each visit was a recall of my medical history and she just never seemed to be prepared for my appointments. After this appointment, she did a physical exam of my breasts, and even though she acknowledged she could feel the lump, she concluded that it was likely nothing. Regardless, I requested a mammogram.
I was able to get an appointment for the following month, in late April. On the morning of the appointment, I had met up with my younger sister Yovanka, who lived close by the imaging centre. It was great to have her there for support and to keep the weight of morning’s events at bay. On our way there, I got a call from the lab saying that their mammography equipment was down and they needed to reschedule the appointment for both the mammogram and ultrasound—I didn’t even know I was having an ultrasound. I had already parked the car, paid, and was walking toward their building on the ever-bustling Danforth Ave when the call came in. I explained that I was already on my way and asked if the ultrasound could be completed and the mammogram rescheduled. When I arrived at the office, they agreed to do the ultrasound imaging and reschedule the mammogram. As luck would have it, the mammography equipment came online while I was in their offices, and I was able to have both procedures done that morning. Afterward, I grabbed a quick bite with my sister, went back to my home office to work and the wait began. Robert was long since home from his trip, but not wanting to cause any false alarm, I hadn’t told him anything. Why bother if its likely nothing I said to myself.
I got the dreaded call in early May to see the doctor at the walk-in clinic to review my results. I held my breath waiting for the appointment date. When I saw her after waiting among the others leaning against the walls, sitting outside of the seemingly always full clinic, I listened to her, waiting to hear the fateful words. But she said, we have looked at your results and everything is fine. You have nothing to worry about, we will repeat in one year.
I can still hear her saying those words. You would think the first thing that I would have felt was relief, but I felt the opposite. I immediately felt apprehensive—what will happen in another year; NO. I said, I think this is a mistake. She pushed back and started down the “You are young and healthy” path. I stopped her with “my mother was told constantly she was young and healthy” only to later be diagnosed with an obscure cancer. We lost her when she was only fifty-five. This isn’t good enough I said. I have lived in this body for 47 years and I know something is wrong. Finally, she relented. She said “what do you want?”
I told her “I want a referral to the Henrietta Banting Breast Centre.” She wasn’t familiar with it, didn’t know where it was. A female MD of colour with a practice bursting at the seams with patients wasn’t aware of the best place in Toronto to refer patients for breast care. I filled out the referral form for her administrative assistant and she signed it. In mid May I got the call from Women’s College Hospital (WCH) and gave a brief explanation of how I had come to this point. They requested the imaging from the lab on the Danforth. It was put on a CD and sent to WCH. A week later, another call to book an ultrasound and mammogram at WCH. I asked the person who called to schedule my appointment, isn’t a bit irregular to be having another series of imaging appointments; I just had one a few weeks ago. I thought maybe she didn’t have all the information and was booking in error. She said they don’t provide her with this information and I could discuss with the doctor at my appointment.
May 31, 2019, I had my first consultation in what would become a series of appointments at Women’s College Hospital. It was at this initial consult that I was able to ask what the reason was for a second mammogram and ultrasound. The answer floored me: the imaging was of such poor quality it was impossible to arrive at any conclusive results. They had to repeat the tests. The CD they received was useless. This was what the walk-in clinic doctor had relied on to tell me that it was nothing—come back in a year. This the basis of her diagnosis.
On June 5th, I returned to WCH for the tests. What an entirely different experience at WCH than was my first mammogram earlier that year. The first technician completed my mammogram and asked me to wait in an adjacent hallway while they prepped a different room for the ultrasound. Quickly thereafter, another technician arrived and ushered me into the ultrasound room and onto the table. They use warm gel at WCH, such a starkly contrasting feeling to the icy cold gel that shocks you to your senses no matter how you brace for it. As the tech was working, she told me that she was calling in a fellow and that there was a likelihood that I would need a third procedure that day. She said, this is a learning hospital, so its very typical that other staffers, fellows, and interns are invited into our procedure rooms. Within 20 minutes, I was getting a biopsy-a right breast core biopsy. And I knew. Yovanka said she was relieved I didn’t look at the needle.
June 12th was my callback appointment to review my results. Robert took the time from work so we could go together. He sat next to me holding my hand when “You have cancer” just seemed to tumble out of her mouth. I froze, I looked at Robert and even though I knew, I didn’t want to believe her.
I don’t think I spoke. She continued filling the deafening silence with “Its very early stages; your self examination allowed us to catch a very early ductal carcinoma in situ that has just become invasive.” In short, my diagnosis was invasive DCIS, ER positive, PgR positive, HER2 negative. She explained that this type of cancer, a double positive HER2 negative, is treatable and typically carries with it a good prognosis. My surgery, she continued, had already been scheduled and I would be back on July 10th for a right breast lumpectomy and sentinel lymph node biopsy. I had so many questions—who decided it was a lumpectomy, what if I wanted a mastectomy, could I decide to do a double mastectomy. I learned later that I would be able to have the conversation with my surgical oncologist. I went from being a healthy 47year old with no doctor, to having a general oncologist, a surgical oncologist, a medical oncologist, and a radiation oncologist. Chemotherapy was not indicated in my treatment plan.
This was the first time that I was told that I had “dense background breast tissue” and that consideration for staging MRI was recommended. I had my first MRI on June 20, 2019; they wanted to ensure that there were no other lumps or masses not detected by the mammogram. I was assessed category D with extremely dense breasts, which lowers the sensitivity of mammography. As part of my post treatment plan, I was getting annual mammogram and ultrasound and annual MRI at six-month intervals. In December 2022, my general oncologist told me that OHIP was no longer covering MRI and I would be progressed to annual ultrasound and mammogram only for the rest of my life. Waiting one full year for my next imaging appointment from December 2022 to December 2023 was agonizing. I hadn’t realized how much the six-month interval had eased my anxiety about possible recurrence. I requested having the MRI reinstated but was told it’s not an option for me anymore. I am crying out for this screening. My imaging results are always qualified with the following: The breasts are composed of extremely dense tissue, which lowers the sensitivity of mammography. Extremely dense parenchyma in both breasts.
The following three months of 2019 were a blur of appointments. My surgery on July 10 was followed by another mammogram on July 30th. The July 30th mammogram showed that some of the lump remained so a second surgery was scheduled on August 14th followed by yet another mammogram to confirm that it was fully removed.
I was allowed to heal sufficiently before my radiation began. I ran a 5K in September and tried to get on with my life. Radiation didn’t seem like a big deal. I had heard so much about the ravages of chemotherapy; my own mother said it was the only part of her cancer treatment that terrified her. Maybe it was a blessing, because her oncology team was unable to find the source of her disease, she never had to undergo chemo before she passed.
But no one I knew had ever said, nor had I read anything about the effects of radiation therapy. I was to have 21 rounds of radiation which began in late September. My medical and radiation oncologists were at Princess Margaret Hospital in the University Health Network. I decided to take the subway rather than drive to my appointments. For one, sitting on the train allowed me to relax and just sit with my thoughts, not navigating downtown Toronto traffic that is in perpetual never ending rush hour. And second, it saved me the aggravation of looking for parking or paying $30 to park at PMH. It was pre pandemic, the train was great! The station was right at Queen’s Park Circle. It was a short walk to the steps of PMH. My series of appointments would run until October 24th of that year when I was able to ring the proverbial bell.
No one prepares you for how your skin will react to radiation—skin with pigment even more so. The cording that happens in your underarm and diminishes your range of motion because of lymphedema from having your lymph nodes removed. My surgical incision started to open from inflammation during my course of treatment, so I was told to take a two day pause to allow the incision to close. My radiation oncologist who was away at this point in my treatment plan had scheduled me in with her alternate to assess my progress and how I was tolerating the radiation therapy.
I’ll never forget her words after she came into the treatment room and was completing the examination. In exasperation she said “Your skin is so black, how am I supposed to see anything, I can’t see anything”. Baffling, the lack of sensitivity training. I eventually developed pneumonitis in my right lung from the scar tissue created by the radiation therapy. It’s a lot.
I have four tattoos— the ones they gave me to use when lining up the radiation machine, a dented breast with a scar, a scar on my right underarm; and for the rest of my life have been told to avoid pressure, sunlight, and injury to my right side; avoid saunas. Any of these things can cause my lymphedema to flare up. My sister selflessly offered to attend my appointments with me even after her harrowing experience some fifteen years earlier, faithfully attending every appointment with our mother as we watched her dying of some unknown cancer. Yovanka, my sister, is now annually screened for breast cancer. I have learned that Black women experience diagnoses in their 40s to a much greater degree than our cohorts not of colour. And our cancers are more aggressive so not surprisingly we have a significantly higher mortality rate.
And today, I sit here, almost 5 years post diagnosis, with a clear mammogram and ultrasound as of December 19, 2023 and I am thankful. Thankful that I live in a country where I didn’t have to mortgage our house to pay for medical care. Thankful for an employer and amazing team that gave me the support and space to get well. I can’t say enough about the support from my manager. Thankful for my family and the support of my sister and husband. Thankful for my friends that were by my side.
Thankful that this happened in 2019; had it been one year later, I am almost certain I would have faced an entirely different outcome. Thankful that my oncology team at Women’s College hospital efficiently handled my care and from that St Patrick’s Day morning discovery to after treatment care all within seven months; five months from diagnosis. We were in full lock down by March 2020; my case would have been viewed as non urgent and I would be on some waiting list of people while my case grew urgent. Would I still be waiting? Thankful that I was double positive, HER2 negative, a form of cancer that is receptive to treatment, not triple negative that is often the diagnosis for Black women. Thankful that because I had an early cancer, my sister now gets annual mammogram screening. She’s the same age now that I was at diagnosis.
Ladies, get to know your normal. Push for what is right and advocate for your own health. Know what you are entitled to and demand it. It took getting cancer to make it easier to get a GP. Primary health care saves lives! Early detection saves lives. Breast self examinations save lives. We need MRI. Black women with dense breasts need MRI. This is my story.