Shikha Manchanda is on her way to becoming a health communicator
'I knew an educated woman - a friend of my mother's - who didn't get herself treated for breast cancer because she was afraid her two daughters wouldn't get married.'– Shikha Manchanda
Five years ago, Shikha Manchanda was fighting for her life.
Diagnosed with Stage III breast cancer at 28, the young mother immediately underwent surgery to remove the fast-spreading disease from her right breast and the lymph nodes in her right arm. In the two years that followed, she withstood radiation and chemotherapy treatments, tested positive for BRCA 1 gene mutation and went back under the knife for a double mastectomy and later reconstructive surgery.
"I wouldn't say it was horrible," said Manchanda, who has since been cancer free and is one semester from earning her master's from Rutgers' School of Information and Communication. "It was a phase of life that taught me more than I could have ever learned otherwise."
And it led her to what she calls her life's mission: Convincing other South Asians to talk about cancer before it's too late.
"Indian people would never know a woman at 28 could have breast cancer, because it would never be discussed," said Manchanda, who emigrated in 2002 from New Delhi, where cancer is still a taboo subject. "I have a voice and I'm not afraid to speak. I should do this for my community and people who can't speak up for themselves."
Bolstered by the support of her family, including husband Sumit Kapur, the Piscataway resident decided to share her story through speaking engagements sponsored by such organizations as the Susan G. Komen Foundation and as a breast health educator for the Women's Health and Counseling Center. The experiences inspired her to turn her passion into a profession. "I thought, "I am a good communicator,'" said Manchanda, who studied marketing and law in India and previously considered pursuing a career as a labor negotiator here. "That's when I started looking at communication programs."
During her treatment at the Cancer Institute of New Jersey, located near Rutgers' New Brunswick Campus and now affiliated with the university, her parents suggested that Rutgers might be the right place for her should she decide to return to school. In 2012, a year after becoming an American citizen, she took their advice.
Now on her way to becoming a health communicator, Manchanda maintains a 4.0 average while raising her daughter Sasha, 7, with her husband.
Removing Cultural Barriers
Promoting cancer awareness and advocacy continues to guide Manchanda's studies here, including a research project on acculturation and self-breast exams and mammograms in which she interviewed South Asian women 40 and older. But since many of her friends back home admit to not performing breast exams despite knowing her ordeal, Manchanda was not surprised with the results - or lack thereof. Only two or three women of South Asian descent were willing to talk with Manchanda for her project.
Manchanda understands their reluctance. Not only does breast cancer advocacy require frank discussion about female anatomy, which isn't typically discussed in traditional South Asian communities, but a positive diagnosis could derail marriage plans for a family's offspring for fear of passing on "bad genes" to future generations.
"I knew an educated woman - a friend of my mother's - who didn't get herself treated for breast cancer because she was afraid her two daughters wouldn't get married," Manchanda said. "While most friends have been a pillar of support, I have had some who tell me "You've been through a lot, but let's not talk about it anymore.'"
With a deeply personal understanding of cancer and the stigma her audience attaches to the disease, all Manchanda needs now to get her message through are "the tools to remove those cultural barriers," said Itzhak Yanovitzky, an associate professor in the Department of Communication.
Yanovitzky, whose research interests include the use of communication campaigns to promote healthier behaviors and lifestyles, studied the use of online communities by breast cancer patients with Manchanda this summer. Their assumption is that a thirst for knowledge is driving this online phenomenon, said Yanovitzky, in which patients seek out other patients with similar prognosis to discuss treatment options.
"The Internet provides anonymity, particularly in the case of South Asian women," he said. "Cancer is very difficult to bring up with their family. It is very difficult to get treatment if they are being stigmatized."
That is why, in addition to speaking publicly, Manchanda continues to spread the word and answer questions about breast cancer through the facebook page, "I Can Fight It," and via Breast Cancer Indian Forum on www.healthunlocked.com. That blog, started by Indian oncologist Sumeet Shah, is one of the few devoted to cancer awareness in India. It is also how BBC Hindi tracked down Manchanda for an interview about her double mastectomy in response to actress Angelina Jolie's similar decision this summer.
Based on his research, Yanovitzky said Manchanda's progression from a seeker of knowledge while having cancer to becoming the one sharing it as a survivor, is not an unusual one. That Manchanda is earning an advanced degree to facilitate that sharing - despite the stigma in her community - makes hers a special one.
"She has a very strong drive and commitment. She's constantly trying to learn from other people's perspectives and experiences," Yanovitzky said. "For her, it's taking this passion and finding a way to take it to the next level."