To the Next Young Black Woman Facing Breast Cancer

“I’ve fervently wished to see women who look like me and have lived through this.”

On a bright, clear December morning, I found myself sitting in the waiting room of the radiology department of a local hospital. There were a half-dozen or so other women in the room, of all different shapes and colors, all clad in the same thin, magenta robe, all waiting for our names to be called. More than once, one of the other women caught my eye and gave me a sad, sympathetic half-smile. I looked around and realized I was easily a decade younger than anyone else in the room. I’m not supposed to be here, I kept thinking.

Five months earlier, I had discovered a lump in my breast while in the shower. Two doctors had assured me it was probably nothing, given my age and the absence of a family history of breast cancer. The ultrasound had looked normal, but a mammogram showed calcifications that were concerning, so there I sat, waiting for a doctor to stick a long needle into my left breast and suck out some tissue samples for testing.

Any updates, bunny? flashed on my phone’s screen—my husband of three months, Lou, checking in from work. Despite my nerves, I’d told him I could handle the biopsy by myself. But after two hours in the waiting room, I was coming to regret my earlier bravado.

The doctor who performed the biopsy said results are usually available in three to five business days, but the upcoming holidays meant it probably would be longer before I heard back. When the Friday before the long holiday weekend came and went without news, I mentally settled in for a long wait, trying to focus my attention on Christmas celebrations with family. The call finally came in the middle of a game of Taboo, during my extended family’s traditional day-after-Christmas get-together.

“Hi, Nadirah. I’m sorry to be calling with this news, but it turns out you have high-grade ductal carcinoma in situ.”

“DCIS,” I said, remembering an abbreviation I’d come across in my extensive internet searches.

“Yes. So you have a faster-growing type of cancer, but it’s very early-stage. This is really the best possible diagnosis.”

The best possible diagnosis? I laughed in bitter shock and disbelief.

The doctor asked me to get back to Boston as soon as possible for additional testing, so I put on a brave face and told my mother and sister, and then Lou and I got in the car to drive north. Back in Boston, I underwent an MRI, and then Lou and I got ready for the honeymoon trip we had planned to South Africa. Since it would take a few days for test results to come back, my doctors said there was no reason not to keep our plans. Mere hours before our flight took off, my phone rang again: The MRI showed other areas in my breasts that looked abnormal. I might have a double mastectomy to look forward to upon my return.

I read up on breast cancer online, and what I learned from sites that came highly recommended did little to calm my fears. I read that, for reasons as yet unknown, black women, who once had lower rates of breast cancer, now have rates equal to those of white women and are more likely to die of breast cancer than our white counterparts. I discovered I was very lucky to have been diagnosed so early, given that women under forty aren’t routinely screened, and that’s true for black women despite the fact that we are twice as likely as white women to be diagnosed with breast cancer at a young age. I raged at the unfairness of the fact that while young women are less likely to develop breast cancer, those who are diagnosed are more likely to be diagnosed with cancers that are more aggressive and later-stage, and we tend to face higher chances of recurrence. Knowing that my own cancer was hormone-negative, I was dismayed to read that black women are more likely to have hormone-receptor-negative breast cancers, which are immune to recurrence-reducing hormonal treatments, leaving fewer avenues open for ongoing management of the disease.

As I read, I felt like all the odds were against me. I didn’t even know whether I should trust the “early-stage” part of my diagnosis, given the other abnormalities the MRI had shown.

Shortly after Lou and I returned to the States, I had my first appointment with my treatment team. The afternoon was a blur of smiling white faces, soothing voices discussing test results and treatment options, and reassuring hands on my shoulder as my knuckles turned white from clutching Lou’s hand. At the end of a four-hour-long marathon of appointments, my doctors understood and supported my desire to pursue breast-conserving surgery. I was lucky; being a PhD student at Harvard gave me access to top-notch surgeons. But so many black people, especially black women, have far less access to high-quality care and more fraught relationships with medical professionals.

Over the next three months, I was subjected to two more biopsies and a lumpectomy to determine the extent of the cancer. In between visits to the hospital, I waited anxiously for results, staring at my phone and willing it to ring while being terrified of what news awaited me on the other end of the line if it did. It was late in the afternoon one Tuesday in March when I got the final diagnosis. The lumpectomy had been mostly successful; it had confirmed that the cancer was not yet invasive, and the margins were negative. I leapt off the couch, screaming and crying and dancing, believing we had finally reached the end of this nightmare.

Two days after that call, I headed to the hospital for a post-surgery follow-up. I expected it to mostly be a formality, rubber-stamping my interpretation of my lumpectomy results. But my doctor informed me that because the margins around the excised tumor had been so small, I would still need either more surgery and radiation, which can cause unpleasant side effects, or a mastectomy. Given my age, my hormone-negative cancer, and the extensiveness of the malignancy, she strongly encouraged me to consider the mastectomy as the best path forward.

I walked out of the doctor’s office holding the pathology report, blinking back tears in the elevator as I tried to call a Lyft to pick me up. I only made it as far as the atrium of Beth Israel before a ragged sob escaped my throat and hot tears began to pour down my face. Ashamed to be crying over the loss of a breast in a hospital where people were fighting not to lose their lives, I called Lou, hoping he could calm me down.

“It’s going to be okay,” he said, and I knew he was right. I tried to focus on the positives: The prognosis was still good; my doctors had taken the time to explain that, despite this bad news, keeping my healthy breast presented no significant additional risks; and I was a candidate for immediate breast reconstruction. But on that day and so many others, all I could think of was what I was losing. I had just come into my sexuality and sense of self, and now it felt like the body I had finally grown to love was being dissected and dismantled, suffering a death by a thousand scalpel cuts.

I wasn’t just worried about losing my breasts because of how they make me look, but because I haven’t yet had kids, and I’ve always assumed I would breastfeed my children. My white girlfriends were quick to assure me I would be no less of a mother for not breastfeeding, but I know that as a black woman, my body and what I choose to do with it are always scrutinized. I kept thinking about how black mothers are already so often maligned, how low-income and black women who formula-feed are shamed by the emphasis on “breast is best,” and how I felt like I was failing my future children by possibly not being able to give them this bit of advantage in a world that is so stacked against them.

Worst of all, it felt like almost no one understood. Friends sympathetically told me everything would be fine because I am “amazing,” which only amplified the contrast between the Strong Black Woman I’m perceived to be and the forlornness, fatigue, and fear I desperately wanted permission to feel. When I turned to online support communities, I often felt just as unseen; popular refrains on breast cancer forums about the perks of getting “new breasts” simply didn’t resonate with the deep mourning I felt for the loss of my own. It didn’t matter that no one else would be able to tell I’d had a mastectomy, or that Lou repeatedly told me he would still love me and think I was beautiful whether I had two breasts or none; I would know, and I was terrified I wouldn’t love myself or think I was beautiful anymore.

After the initial shock of deciding to have a mastectomy subsided, I found myself realizing that I no longer feared dying. Now I was afraid of living, because I had no idea what my life after cancer would look like. I was scared I wouldn’t look like myself anymore. I struggled to envision my post-surgery body, because all the before-and-after pictures my doctors showed were of white women, usually a few decades older than me. The question I wanted to ask but suspected no doctor could answer was: “What if it feels like I’m trapped in a body that doesn’t feel like mine anymore?”

I turned to the internet, but I was again disappointed when I found few readily available public narrative —with the exception of that of sexuality educator and writer Ericka Hart, and BRCA advocate Erika Stallings—about what this diagnosis and surgery would mean for me, at my age, at this stage of my life, and what it would mean for the people close to me.

Throughout my breast cancer experience, I have often felt invisible to people in my day-to-day life, on the breast cancer discussion boards, and in the media. I’ve fervently wished to see women who look like me and have lived through this. Picturing the future is hard enough when you’re dealing with a disease that threatens your life as you know it, and your very life itself. It’s even harder when there are so few models of survivorship in which you can see yourself.

On average, one in eight women, or approximately 12.5 percent, will have breast cancer at some point in her life, but only one in 1,732 women, or less than 1 percent, will be diagnosed with breast cancer before age thirty. What happened to me is rare, but I’m telling my story because representation of young and black women in narratives about breast cancer matters; it shapes conversations and research, which in turn affects outcomes.

I’m also telling my story as an open letter to my fellow young black women. I don’t want anyone to read this and panic about every lump or change in their breasts (although I hope my experience encourages my friends to perform self-exams more frequently, as it’s common for it to be the patient, not a doctor, who discovers the tumor in a young breast cancer patient). As scary as it is to think about breast cancer in one’s twenties or thirties, the reality is that it does happen, and my experience leads me to believe it’s better to be safe and get things checked than to be sorry later. Early detection may not always save one’s breasts, but it might just save one’s life.

I hope the next young black woman facing breast cancer finds this and realizes that we may seem to be few, but we are not alone. I hope she feels empowered and equipped to ask questions, to find doctors she feels comfortable with, and to advocate for herself and get the treatment from doctors and support from loved ones that she needs and deserves. Above all, I hope she knows there can be life after breast cancer. There are revision surgeries and scars and insecurities and fears, but there can also be newlywed sex and the hope of children and the knowledge that you can be dragged to hell and then claw your way back to the promised land.