Meet Rhea, Uncovered
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Rhea (she/her) — Indian, South Asian
Diagnosed at 38 years old — HER2+ invasive ductal carcinoma
I am a teacher. I am a learner. I am a survivor.
How could I possibly have breast cancer? The quintessential breast cancer patient was an older white woman, with grey hair and a pink shirt being supported by her middle-aged daughter. A grandmother! Not a young South Asian mom with a daughter in kindergarten and a baby. I will never know what role my pregnancy, age or ethnicity played in how long it took me to be diagnosed, but what I do know is that I am not alone.
An increasing number of women under the age of 40 are being diagnosed with breast cancer. A disproportionate number of women of colour have delays in their diagnoses which often means they are diagnosed at later stages and have poorer outcomes. Being part of this year’s Uncovered Project was incredibly important to me because I want young South Asian women who are newly diagnosed to know that they are not alone but that there are unique challenges to being a woman of colour with breast cancer.
One challenge came early on in my treatment. A few days after my diagnosis, I was scheduled for a partial mastectomy. A few weeks later, I had a central line placed in my chest to save my veins from chemotherapy. During a follow-up, my surgeon surveyed my twin scars with disappointment: they were not healing well. The 10 cm scar across my right breast was already starting to form a ropey, thickened raised scar and my smaller central line scar was inflamed and still painful to the touch. When I asked why my scar didn’t look like the thin, nearly invisible pink lines ubiquitous on the internet, my surgeon attributed my unsightly scars to bad luck. It wasn’t until almost a year later when I was wincing in pain at my central line scar, now a series of three very sensitive knots of scar tissue, that a South Asian nurse at the chemotherapy clinic commented offhandedly that in her experience, many people of colour have difficulties with healing after surgery and that melanated skin often forms keloid scars, like mine had. As soon as I got home, I found articles that supported my nurse’s observations: dark skin, particularly Black skin, is significantly more likely to form thickened keloid scars. Now, more than three years after surgery, my central line scar has continued to become increasingly unsightly, sensitive, sore and acts as a painful, constant reminder of my experiences. So much so, that I am considering plastic surgery to have it removed. To this day, I still wonder why my surgeon, with more than 30 years experience as a breast cancer specialist in a major multicultural city, did not immediately suggest I apply silicone patches to my scars to potentially avoid this situation, why I was not warned that melanated skin is prone to this type of scarring or offered an alternative placement for my port.
“The unexpected is an especially scary thing when it comes to cancer.”
This was not the only time that I felt that my needs as a woman of colour were not being met by my team of doctors. As I attended my 24th radiation session, I asked my specialist what I could expect in the following days and weeks, as my skin had begun to show signs of radiation damage. She said that I could expect “redness or a bright pink colour, similar to a sunburn.” I nodded and took notes, though I had never had a sunburn. Over the next few days, I watched as my skin turned darker and darker until my skin began to take a turn for the worse: it was black, tight and splitting open at the creases. The unexpected is an especially scary thing when it comes to cancer. I immediately scheduled an appointment, secured last minute babysitting and cried all the way to the hospital, as my partner tried in vain to comfort me. We waited for nearly 3 hours for someone to see my breast and 5 minutes for them to declare it normal. Frustrated, I asked why my skin had not turned red or pink as suggested. The answer: white skin turns pink or red but dark skin gets darker. This single experience had a profound effect on me: it made me feel marginalized by my cancer care team. Here at a major Toronto cancer centre, my specialists were choosing not to truly see me and it was affecting my care. The short term consequence of the experience was unnecessary anxiety and stress, but the long term consequence was that there was a part of me that no longer trusted my team. In addition to asking my doctors about possible side effects, I began to ask other women of colour what their personal experiences were. I searched for images on the internet to give me a better sense of what to expect after surgery and radiation. I wondered why this was my responsibility and if every woman of colour felt this way during treatment.
“Healthcare institutions are not bias free.”
My experiences above highlight how healthcare institutions are not bias free. Covert discrimination certainly exists in the form of delays in diagnosis, exclusion and misinformation and comes at the expense of the mental and physical health of the patient. The Uncovered Project is absolutely critical in providing a space for women of colour to share their stories of being excluded from their own healthcare. I believe that sharing our stories is fundamental to identifying, questioning and dismantling the biases inherent in our healthcare institutions. — Rhea