Cheating FateAfter witnessing the ravages of breast cancer in her beloved sister, a 34-year-old teacher and writer decides to cut fate off at the pass with a life-changing decision.
Grace Talusan, right, with her older sister Mary Talusan Lacanlale, left, at their brother Paul’s wedding in June 2006, a day before Mary’s hair fell out from chemotherapy treatments for her breast cancer.
My older sister Mary always did everything first. She started school, wore a bra, drove a car, graduated college, recited wedding vows and gave birth, all before me. If I wanted to see what my life would look like in three years, I just had to look at hers.
Then, at 36, Mary was diagnosed with breast cancer.
Because of her young age at diagnosis, doctors suspected a hereditary link. Mary tested positive for the breast cancer gene mutation called BRCA1, which meant that I had a 50 percent chance of also carrying the gene and all its attendant risks. The BRCA1 gene alteration, one of two known gene mutations (the other is labeled BRCA2), confers an up to 87 percent risk of breast cancer and an up to 40 percent risk of ovarian cancer in a woman’s lifetime.
I had a decision to make — should I take the genetic test and find out if my sister’s fate might be mine? I didn’t have much time to figure it out as my sister moved with her baby and husband from Los Angeles to Boston for her cancer treatments. Mary knew she’d need our support and while I welcomed the opportunity to help my ate (pronounced ah-teh, the Filipino term of respect for older sister) through this difficult time, I was plagued with secret anxiety. Would I be witnessing my own future?
I sat beside Mary as her oncology nurse suited up in protective gear to shield herself from the bright red fluid that she administered directly into Mary’s veins. Later, I helped Mary clean her hair off the bathroom floor tile. I stood behind my sister as we looked into the mirror. I lied, “It doesn’t look that bad.”
During her son’s first birthday party, a few days after her fourth chemotherapy treatment, Mary sat across the table from me under a festive outdoor tent, talking to a party guest. Plates of Filipino party food were laid out in front of us: lechon, pancit and fresh lumpia. Suddenly, Mary’s eyes fluttered. The pink drained from her lips. Mary slumped into her folding chair and her forehead banged against the table. As my family members, mostly health care workers, attended to Mary, I hid in a dark room in the house.
When my sister fainted in front of me, I saw how quickly the life had drained from her. A gaping chasm seemed to open between us, even though my sister was only a foot away. I felt like I was seeing my sister die in front of my eyes.
But Mary had only fainted, an effect of the chemotherapy, and she returned from the hospital later that night. In those hours in the hospital, her 1-year-old son Gavin took his first steps. We snapped photos of Gavin’s crooked smile and his tiny fists stretched out to balance because we didn’t want cancer to steal another joyful moment from my sister.
During this time, my mother told me about my cousins in Texas. In that family of four women, two sisters in their 30s and 40s were diagnosed with breast cancer. The third sister tested positive for the BRCA2 gene mutation and decided to undergo preventative surgery to remove both her breasts and ovaries. The fourth sister tested negative for the BRCA2 gene mutation. She believed her risk was the same as women in the general population, a one in eight lifetime chance of breast cancer. But when she developed breast cancer, everyone was stunned. A rare and unfortunate genetic event revealed that while my cousin didn’t have the BRCA2 mutation, she had BRCA1. It seems the BRCA1 gene mutation was passed down from our fathers, who are brothers.
“Have you considered taking the genetic test?” my mother asked carefully. Her question was restrained, taking into consideration that in America, you talk to your adult children as adults, not with the guilt and pressure that would otherwise come from your Filipino Catholic upbringing.
But when we found out that my Texas cousin’s breast cancer had spread to her brain, my mother phoned me, frantic. Once breast cancer spreads to your brain, there is no cure.
“Take the genetic test!” my mother screeched. “Take it!”
My mother repeated something I had heard my whole life. “Look at what happened with your sister. Learn from her experience.”
***
Historically, Asian American women exhibited a lower breast cancer incidence over other populations, but in studying breast cancer cases through the 1990s, epidemiologists discovered rising rates in Asian American women, according to the International Journal of Cancer. With each generation in the United States, breast cancer rates increase for Asian women. Scientists attribute this to the Western lifestyle — fewer children, less exercise and increased obesity.
Although heart disease has long been the number one killer of American women, recent studies from the World Health Organization show that cancer is fast overtaking heart disease. Lung cancer is the number one cancer killer among American women, but breast cancer is close behind. The rising rate of breast cancer cases among Asian American women (and among Asian women in Japan, Singapore and Korea, where numbers are doubling and even tripling, according to WHO) demonstrates the need for more awareness. Researchers reported that physicians may be operating under the false perception that Asian American women aren’t as susceptible and may not recommend breast cancer screening as often as they should.
Even computer models designed to identify which women are likely to carry the genetic mutation for breast cancer underestimate breast cancer risk in Asian women, according to a recent study published by the Journal of Clinical Oncology. For Caucasian women, computer models designed to identify those at-risk for hereditary breast cancer were accurate, but when used with Asian women, the computer models “failed in predicting the presence of mutations in almost half of the Asian women studied,” the study reported.
“It is a catch-22. Since current models underestimate the risk for a mutation in Asian women, fewer Asian women are being referred for genetic counseling and testing, and fewer Asian Americans will be aware of genetic testing,” says Sue Friedman, executive director of Facing Our Risk of Cancer Empowered or FORCE (facingourrisk.org), a nonprofit organization for those touched by hereditary breast and ovarian cancers. “My strong recommendation is for any woman who is concerned that the cancer in her family might be hereditary, to seek out a qualified genetics expert such as a genetic counselor.”
With my mother’s voice in my head, “Learn from your sister,” I made an appointment with a genetic counselor. When my genetic counselor filled out my medical family tree, the crossed-out squares and circles hung like dead fruit. Cancer had killed my grandmother, uncle and aunts.
I was on my way to the hospital to visit Mary, who was recuperating from a mastectomy, when my genetic counselor called. My blood test was back. I received the news in my genetic counselor’s office. Afterward, I walked to another part of the hospital campus where my sister was flat on her back, her bald head covered by a cotton turban. One day out of surgery, Mary looked gray and weak. She could barely lift her hand to wipe the tears as I reported my results.
“I’m sorry. I don’t want you to go through what I’m going through,” she said, gesturing to her body, ravaged by cancer and its treatments.
I smiled at her. “I’m fine,” I said. I didn’t want my ate to worry about me.
“It will be different for you,” Mary said. “You can prevent the cancer from starting.” From conversations with my doctors, I knew the price of prevention — removal of both of my healthy breasts. I could exchange my currently cancer-free breasts for the opportunity to cheat fate.
I was 34. I wasn’t married. I thought I might still have children and if I had these children, I wanted the option to breastfeed. The mastectomy would permanently, irreversibly change my body. In clothes, I might appear the same, but I would no longer enjoy sensation in my breasts because they would be gone.
Brains were always more important to my identity than breasts. I’m a writer and teacher; I didn’t want to risk the effects of “chemo brain,” something I’d heard survivors complain about. My sister lost a year of her life to cancer treatments. Although Mary is healthy, she always fears cancer’s return. And recently my younger sister Liza, who tested positive for the gene, had a non-cancerous lump removed. This was life and death.
A few months ago, both my breasts were removed. My sister warned the surgery would be difficult. “Every day you’ll get a little bit better,” Mary advised. “Remember that.”
My breasts may be gone, but I am still here, doing what I love — writing and telling a story.
STORY Grace Talusan
