Tags: breast cancer, Health
I sat in the driver’s seat next to my mother. As I tried to figure out the best way to address a difficult topic, I recalled a similar scene from 15 years ago. My mom had swiveled around in the driver’s seat to ask me in a quiet voice, “are you… having sex?”
Her tone overpowered her words. What she was really asking was log kya kehenge? What will people say?
Today, our positions swapped in the car, I turned to my mother and asked her, “what do you think about implants after breast cancer?”
In the silence, I could sense her discomfort. I continued to probe, asking for her thoughts on breast reconstruction following surgery for breast cancer – the topic of my current research as a surgeon. “It is meant to be hidden,” she finally muttered after the crimson faded from her face.
***
The sense of shame in the way women discuss their bodies directly stems from the pervasiveness of patriarchy within South Asian culture. The bodies of women are exploited for men’s needs and desires. As a result, women feel uncomfortable speaking about their biology. The lack of these important, candid conversations can deeply impact health, especially when it comes to breast cancer.
In the United States, breast cancer affects one in eight women. However, the burden is not borne equally by women from different identities, and breast cancer outcomes are fraught with racial and ethnic disparities.
Studies show that Asian-American women have lower rates of screening for breast cancer, and that they are more likely to be diagnosed at advanced stages, with more aggressive cancers, and at younger ages compared to their white counterparts. Most notably, Asian women have 55 percent lower odds of undergoing breast reconstruction after mastectomy (i.e. surgical removal of the breast mound) compared to white women. These trends are echoed in Black and Latina communities.
In 1998, the US Congress passed the Women’s Health and Cancer Rights Act which mandated that private insurance plans cover reconstruction benefits following mastectomy. Yet, women of color have been slow to adopt reconstruction as a part of their breast cancer treatment.
***
I asked my mother why she believed our sisters, aunts, and grandmothers were less likely to opt for reconstruction. She finally replied “You should not try to show that you have a good figure. Your clothing should fully cover your chhati – it should be loose-fitting. This is what my grandmother taught me.” Regardless of whether women choose reconstruction or not, her understanding was that others should not be able to notice the physical impact of breast cancer.
My mother’s reply made it clear to me that in my culture both honor and shame live in a woman’s bosom, and that family honor has been housed in female chastity for generations. This was especially evident during the 1947 partition of India, an event that may be just as difficult to discuss as sex or breasts. The movement of Hindus toward India and Muslims toward Pakistan was one of the largest – and most violent – human migrations in history. My family was forced out of their homes and made to trek across the newly outlined border dividing India and Pakistan.
As my great-grandmother left her home in Karachi with only what she could carry with her, she bound her breasts tightly to her body in an attempt to make it look like she had none. During this period of migration, among other crimes, it was also common to carve off women’s breasts as a tactic to shame fleeing families. As my great-grandmother embarked on her journey by foot and by train, she saw these mutilated body parts along the road. Her horror – as well as her quick thinking to bind her breasts – is a tale passed down from mothers to daughters in my family.
With my medical background, I can’t help but think about the women who fell victim to those machetes. Did they end up dead from a slow bloodletting or bacteria invading the bloodstream? Or perhaps they survived, though permanently disfigured and psychologically maimed. Losing a breast was not only a loss of one’s own dignity but also a loss for one’s family and community.
***
Despite the life-giving nature of breasts, breast cancer can silently take life in a number of ways. The way South Asian women talk about their breasts impacts how they tend to neglect their body’s needs after a breast cancer diagnosis. It’s common to see South Asian women sacrifice their own needs to care for others. Research shows that they do not raise concerns about breast health in order to maintain harmony in the family and avoid social ostracism due to cancer stigma. In fact, the inability to fulfill household duties is a major stressor among South Asian women following a breast cancer diagnosis. They fear rejection from their husbands and some report being left by their partners following breast cancer surgery.
Through my work, I have the privilege of immersing myself in the powerful stories from breast cancer survivors. One woman I met watched a cancerous bulge grow in her breast, ignoring the lump for years even after it started to poke through her shirt. One day, a friend thought something was falling out of her bra and as the conversation unfolded, her friend suggested she see a doctor. Her malignancy had erupted through the skin. The woman told me, “I had no idea that that could have been breast cancer! I thought it was not bothering me and eventually, it will go away. In my culture, you don’t talk about your breasts.” Stories like this warn us that sometimes everyone keeps looking away until it is too late.
Even within unique family dynamics, the taboo surrounding breasts seems to persistently color experiences. Another breast cancer survivor told me that, following her own diagnosis, she felt at a loss as doctors asked her about her family history of cancer. She attempted to investigate, and her Aunt accidentally exposed that she too had had breast cancer and a mastectomy. However, the patient’s further probing of her Aunt’s experience was met with a scolding – “you are asking too many questions!”
***
I, too, keep asking questions; I seek to understand how culture shapes the way women approach breasts and therefore, breast cancer. South Asian culture has a complicated relationship with breasts, from the evolution of our clothing to cover our upper bodies to the breast tax that used caste to determine who could preserve their honor, to the partition, when women’s bodies became the “space over which the competitive games of men [were] played.” All these events are rooted in historical trauma with lasting impact transmitted through intergenerational trauma.
As we keep talking, my mother shares with me that she does not feel threatened by the potential that someone could harm her body if they notice her breasts – at least not in the way her grandmother felt. Yet, deep in my gut, I understand the feeling that baring her chest still feels unsafe. I simultaneously understand the impulse to protect our honor by hiding our breasts and the importance of shedding that shame to protect our health.