Cancer Is in My Soul

After my mother, sister, and cousin died of breast cancer, I knew our family wasn’t just victim to random bad luck. But in 1980, no one had yet connected the genetic dots.

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Annie Parker

It took a lot of soul-searching to decide to become so public about both my family’s and my own experience with cancer. But I hope our story brings solace to others facing a similar circumstance and encouragement to persevere when circumstances seem hopeless.

—Annie Parker

The threat of getting cancer began for me before I was born. In 1950, when my mother was pregnant with me, she was diagnosed with breast cancer and refused treatment until after she gave birth, so I have always felt that cancer was woven into my soul. For the first year of my life, I was raised by my grandmother and aunt while my mother recovered from a mastectomy and cobalt treatment that left her too ill to care for an infant. Because cancer was still a closeted disease in the 1950s, I never learned that my mother had breast cancer until after she passed away from secondary lung cancer when I was 13.

Until my mother’s death, I remember having a very happy childhood that was filled with lots of love and laughter. But cancer affects the whole family, and after my mother died life wasn’t the same. My sister Joanie and brother Doug moved out of the house, and my father, brokenhearted over my mother’s death, sank into a depression and died 3 weeks before my wedding in 1969.

More Than Bad Luck

Because Joanie was 10 years older than I am, she became my surrogate mom, and I went to her with all my problems. When she was diagnosed with breast cancer in 1978 and died a year later of ovarian cancer, I was inconsolable. During that year, my cousin Carolyn was also diagnosed with breast cancer and passed away. They were both just shy of their 40th birthday.

Although breast cancer wasn’t commonly linked to genetics in the 1970s, I instinctively knew there had to be something more at work here than simple bad luck, which was what my gynecologist kept suggesting to reassure me that I wouldn’t be next on the list. Even after I was diagnosed with cancer in my left breast in 1980 at the age of 29, my doctor refused to consider a genetic basis for the breast cancer that had taken so many beloved family members and that had now come for me.

After undergoing a radical mastectomy, I became obsessed with trying to learn what the common thread could be that bound together my family’s destiny with cancer. But back then there was no Internet or social media to turn to for information or to discover that a woman named Mary-Claire King, PhD [American Cancer Society Research Professor, Departments of Medicine and Genome Sciences, at the University of Washington, Seattle] was researching an inherited susceptibility to breast and ovarian cancers.

The Answer at Last

Although news about Dr. King’s work and the possibility that there could be a genetic basis for breast and ovarian cancers had started to seep into the medical literature by the late 1980s, when I went to my gynecologist complaining about bloating, vaginal bleeding, and back pain, I was told that my symptoms were the result of stress from my recent divorce. I was advised to see a psychiatrist.

When my ovarian cancer was finally diagnosed in 1988, it had spread to the peritoneum. At that point, I needed a complete hysterectomy and 12 months of grueling chemotherapy.

Finally, in 1994, 4 years after Dr. King’s discovery that a single gene on chromosome 17q21—which she named BRCA1—was responsible for inherited breast and ovarian cancers, my oncologist called and said he wanted me to be tested for the gene mutation. In fact, I was one of the first people to be tested in North America for the BRCA gene mutation, and the Tech Museum of Innovation in San Jose, California, had a whole exhibit devoted to my testing. They even sent a film crew up to Toronto to film me and family members.

I got my answer 2 years later. (Today, gene sequencing takes less than 3 weeks.) I did indeed carry the BRCA1 gene mutation.

My reaction was jubilation because finally I had the answer I had searched for all my adult life. At last I knew for sure that what had doomed my mother, sister, cousin, and me to cancer wasn’t random bad luck but an inherited susceptibility, as I had always suspected. 

Cancer Is My Life

In 2005, I was diagnosed with an unknown primary cancer that had attached to my liver. Even though there is no apparent connection between this latest cancer and the BRCA gene mutation, I instinctively feel there must be a link. All I know for sure is that cancer is my life.

Despite the immeasurable pain of losing so many family members—and nearly my own life—to cancer, the disease has made me the person I am today. It’s a cliché, I know, but I really do live every day as if it were my last because I know that at any moment the course of my life can change. And that’s true for everyone.

I recently got to tell my life story in a movie called Decoding Annie Parker [see “Decoding Annie Parker: Hunting the Breast Cancer Gene,” The ASCO Post, November 15, 2013]. I hope it gives other people facing a cancer diagnosis the courage to overcome their fear and the knowledge that they are not alone.

It has been especially gratifying for me to meet with oncologists and researchers at screenings of the movie who have said that the film gave them a new appreciation and understanding of what goes on in the lives of their patients after they leave the doctor’s office. Their words and kindness have been humbling.

It took a lot of soul-searching to decide to become so public about both my family’s and my own experience with cancer. But I hope our story brings solace to others facing a similar circumstance and encouragement to persevere when circumstances seem hopeless. ■

Annie Parker is writing an autobiography. Her book and the film, Decoding Annie Parker, are scheduled for commercial release in spring 2014. Ms. Parker lives in Toronto, Ontario, Canada.