My Breast Cancer Journey Revealed the Flaws of an Unjust Health System

Every weekday for six weeks this fall, I had radiation for early-stage breast cancer. October 9^th was my last treatment. This journey has been a lesson in privilege, structural inequality and our broken social and economic systems.

In May, I saw my obstetrician in New York City for pain that I had been experiencing in my right breast. My doctor referred me for a breast ultrasound & mammogram, prescribing scans for the right breast only. The imaging department at the hospital my OB is affiliated with told me it would be a three week wait for an appointment. I had already put off the visit for four months: I have a full-time job, three young children, and I kept thinking if I just waited a little longer the pain would go away. But the hypochondriac in me had finally kicked into high gear and wanted to be seen sooner. So I called the breast center at my local hospital, only 15 minutes from home, and was seen the following week.

When I arrived for my appointment, the receptionist let me know that because I was new to the hospital and didn’t have any previous imaging there, they would need to do scans on both breasts. They helped me call my obstetrician and I immediately obtained a new prescription. One stressful hour later, I learned my right breast was healthy — the pain was normal and nothing to be concerned about — but that I had calcifications on the left breast that looked suspicious. I got a call at 4 pm on a Friday afternoon and learned the cells were cancerous.

Within ten minutes of hearing the news, I got a call from a breast cancer navigator who immediately scheduled my follow up appointments and explained what I could expect in the coming weeks. I had more mammograms, ultrasounds, breast MRIs, biopsies and numerous consults. Each visit took many hours during a typical workday, and I had to rearrange my work schedule for appointments whenever the doctors could squeeze me in.

I had surgery in July, six weeks after initial detection. The cancer was caught very early, my surgery was straightforward, recovery was relatively easy (but still required taking weeks off of work) and the risk of recurrence would be very low. My doctor joked that I should thank my breast pain for getting me in for a checkup — had another year passed before detection, it could have been a different situation. I was lucky. I was — and continue to be — so grateful that my prognosis was excellent.

But even though my cancer was early stage, the treatment process was intense and took its toll. After the surgery, I had more follow-up visits with a radiation oncology team. That was followed by six weeks of radiation treatment, five days a week (which again I had to accommodate into my work schedule).

Over the last five months the same questions have been plaguing me.

What If I were an hourly or low-wage worker? My health condition could have lost me my job and the ability to financially support my family. I was lucky that my employer was a constant source of support — my paycheck and my job security were never at risk.

What if I didn’t have a generous employer who provided paid leave? New York State is a national leader on paid family leave, ensuring paid time off with job protection for people due to multiple reasons. These include having a serious health condition or caring for a family member with a serious health condition, bonding with a new child (newborn, adopted or fostered) as well as assisting a loved one when a spouse, domestic partner, child or parent is deployed abroad on active military service.

Indeed, under New York’s policy, my partner could have taken leave to care for me and would have received a 55 percent wage reimbursement (up $1,357.11 per week). What if my partner didn’t have a flexible work schedule? What if I didn’t have reliable transportation or childcare? How would I have cared for my family and managed my own health crisis? At a different organization or company, my options as the person who actually needed care would have been to use my vacation or sick days — if I was lucky enough to have them — and then to receive a maximum of $170 a week for short term disability.

What if I lived in one of the many communities in this country that lacks women’s health services? What if I relied on a Planned Parenthood or a Title X clinic that has closed or reduced hours and services because of politically motivated and medically unsound government restrictions? How would it have delayed my initial visit, diagnosis and treatment? How far would I have had to drive to see an OB or a breast specialist, to get my imaging and daily treatment?

The story I’m telling today would likely be very different. Our ability to care for ourselves during a health crisis should not be dependent on generous employers or on our zip code. We need more robust public policies to ensure we all have access to the same paid leave that I had.

Lots of women across the United States will have the very same type of cancer I had — and many of them will have much more serious cases. But because our health system is broken and unjust, many of them will not have the same experience I did.

I know white privilege was at work every day before, during and after this process — in my doctors hearing my concerns, believing my pain and treating me with respect. In having immediate access to high quality care. In having insurance that is accepted by every specialist I called and saw.

Over the past few years the incidence rates of breast cancer among white women has largely plateaued, while it continues to rise among Black women, who are diagnosed at later stages of the disease, often experience delays in accessing treatment, and are 42 percent more likely to die from the disease than white women.

This disparity reflects the stark racial inequities in our health system: Black women are three to four times more likely to die from pregnancy related causes than white women; their infants experience a morality rate twice that of white infants; and Black women routinely report that physicians discount their pain and health concerns, delaying diagnosis and treatment of a range of issues. These injustices should outrage all of us, and should be a top priority for every policymaker in this country.

I am grateful for my health and the excellent treatment I’ve received. I am relieved I am, and will continue to be, okay. I am tired from radiation and a long slog of health stress. And I am so angry that politicians are working to make women’s lives so much harder, sicker and less safe. Politicians are laser-focused on returning us to the days of gender discrimination in health care. They’re focused on shuttering health clinics that are a first line of defense, detection, care and support for so many.

The last five months have convinced me more than ever before that this must be the year that progressives unapologetically center women. Not women like me, but those whose stories won’t make it to a wider audience. Whose health access and outcomes are shaped by our country’s long legacy of racism and sexism and the toxic combination of both.

I’m done with radiation and done with breast cancer, but I’m not done with this fight.