Many Indian Americans face cultural taboos that lead to silence around breast cancer, complicating their experiences with diagnosis and treatment.
When Nibedita was diagnosed with breast cancer at the age of 40, she made the difficult decision not to inform her mother or mother-in-law, both of whom lived in India. This choice, rooted in love and concern, ultimately left her feeling isolated.
Both women were already grappling with serious health issues; Nibedita’s mother had surgery scheduled, while her mother-in-law was gravely ill. Living thousands of miles away in Los Angeles, Nibedita wanted to shield them from the worry and pain that would accompany her diagnosis. “So I told my sisters, but I couldn’t tell my mom,” she recalled.
This silence became one of the most challenging aspects of her journey. During video calls, she felt compelled to maintain a facade of normalcy. “It hurt — talking to Mom during that time, and pretending that it’s all okay,” she said.
In South Asian families like Nibedita’s, the silence surrounding breast cancer is often complex. A diagnosis frequently comes with an additional, invisible burden: the pressure to keep it secret. Cultural taboos surrounding women’s bodies, fears of stigma, and the weight of the phrase ‘log kya kahenge’ — meaning “what will people say?” — contribute to this silence. This emotional isolation can have serious medical implications, leading to delayed diagnoses, lower screening rates, and postponed treatment until a crisis occurs.
Dr. Ranak Trivedi, a Stanford researcher who has studied South Asian families navigating cancer, noted the profound impact of this silence. “It shouldn’t be called cancer — it should be called an earthquake,” she said, echoing sentiments expressed by her own mother when diagnosed with breast cancer.
In the Indian context, the silence surrounding breast cancer is often linked to broader cultural taboos that discourage open discussions about reproduction and sexuality. As a result, conversations about women’s health issues are frequently avoided, further entrenching the silence around breast cancer.
Participants in Dr. Trivedi’s study acknowledged that while they did not personally internalize these stigmas, they recognized their prevalence within their community. “I know that my mom thinks that, or my aunt thinks that, or I know society thinks that,” they shared.
Dr. Trivedi observed this silence while speaking with friends whose parents were falling ill. One case that stood out involved a physician in India who was diagnosed only after her cancer had metastasized to her spine. Even after receiving the diagnosis, her family debated whether to disclose the truth to her, ultimately deciding to keep it hidden until she began chemotherapy. Tragically, she passed away just months later.
This experience underscored for Dr. Trivedi the powerful impulse some families feel to shield patients from the harsh realities of a cancer diagnosis. “There’s so much deep-seated fear and stigma around this that even people who are physicians themselves living in places like Delhi are also fearful and are not getting diagnosed,” she explained, highlighting the challenges faced by the Indian American community.
In Los Angeles, Nibedita relied on a close-knit circle of family friends for support during her treatment, which included a lumpectomy, chemotherapy, and radiation. With no immediate family nearby, her friends stepped in to help, cooking meals and driving her to appointments.
“We are really blessed,” Nibedita reflected. “I didn’t cook for three, four months because the community was just there, bringing in food. You want rides or anything, everything, they were there.”
However, as she began to lose her hair and wore hats to conceal it, her mother-in-law inquired about her indoor attire. Nibedita felt guilty lying, saying it was cold, but she knew the truth would only cause her mother-in-law more worry.
As stress mounts from the cancer diagnosis and treatment, South Asian women often face an additional layer of anxiety: the fear that others will discover their illness. This stigma leads some patients to carefully manage who receives information about their condition, a process Dr. Trivedi describes as “triaging” information. In Nibedita’s case, she informed close relatives and friends in the U.S. while keeping older family members in India unaware of her situation.
Clinicians involved in the Stanford study acknowledged the difficulty of balancing cultural norms with established medical practices. Dr. Trivedi discusses these conflicts in her research on culturally attuned care, noting that some families may request that a diagnosis not be disclosed to the patient, despite the ethical obligation to respect patient autonomy.
Researchers also differentiate between social isolation and loneliness. Social isolation refers to the number of people in a support network, while loneliness reflects the emotional experience of feeling alone, even when surrounded by others. Dr. Trivedi shared the story of a patient who, despite living in an intergenerational household, kept her cancer diagnosis hidden from her in-laws.
For many patients, the burden of a cancer diagnosis is one they choose to bear alone, fearing that sharing their news will add to the worries of those they love. Rahul Mahadevan, a healthcare executive who founded WiTT (We’re in This Together), recalls his own reluctance to seek help during his treatment. “I didn’t want to put one more thing on their plate,” he said, reflecting on the guilt many patients feel when asking for assistance.
These experiences highlight the dynamics of South Asian families, particularly in multigenerational households where caregivers are often deeply involved in decision-making for the patient. Sandhya Acharya, diagnosed with an aggressive form of breast cancer at 63, faced a similar situation. Her husband, Mukund, was by her side throughout her treatment, but Sandhya’s mother chose not to inform her father about the diagnosis, fearing it would devastate him.
Despite the challenges, there are signs of change. Punita Khanna, a healthcare executive and cancer survivor, has become an advocate for breaking the silence surrounding breast cancer. After years of keeping her diagnosis private, she found strength in sharing her story and discovered that many women were carrying similar burdens.
“They would whisper, ‘I never told anybody. Well, I only told my husband. I never told my daughter till I was older,’” she recounted. Now, more Indian American women reach out to her for guidance on prevention and diagnosis.
As the conversation around breast cancer continues to evolve, it is crucial to address the cultural barriers that contribute to silence and stigma. By fostering open discussions and encouraging support, the Indian American community can work towards a more informed and compassionate approach to breast cancer awareness and treatment.
According to India Currents, breaking the silence is vital for improving health outcomes and fostering a supportive environment for those affected by breast cancer.