My dad was afraid his DNA doomed me.
After my mammogram last August, I was away when I was notified something was amiss. But I was a healthy, married Manhattan teacher with dense breasts that had never worried me before. Unlike Angelina Jolie, I didn’t want to know what I’d die from or take extreme preemptive measures against potential medical disasters.
This upset my cantankerous father (a Jewish Dr. House), who called to say, “What the hell are you waiting for? Get to the doctor!”
“Forty-five percent of women have cloudy scan results like mine,” I said, after a quick Internet search. “Why can’t you be rational about breast cancer?”
“Because I might have given it to you!” He slammed down his landline.
The writer, bottom left, and her family in 1967. (Photo courtesy of Susan Shapiro)
Craving his approval, I felt hurt. Yet I knew he’d yelled from fear. Watching his mother and only sister Shirley suffer from the disease had motivated Dad to become a physician. Shirley was a stubborn, edgy, raven-haired Floridian beauty who’d had it rough. My grandfather had refused to pay her college tuition, believing girls didn’t need education. Shirley married young — to escape him. But her first husband died of illness in his 20s. Her second spouse was imprisoned. Like me, she never bore a child. She drank, smoked, fell sick in her 40s, and died in her 60s.
“You’re just like Shirley,” Dad told me.
“I am not! I’m not tragic,” I argued, hating that he linked me to his darkest shadow.
When I was born, he was a 29-year-old Midwest hospital resident. In my favorite photograph, he held my hand at Candy Cone ice cream parlor, a Marlboro dangling from his lip. He taught me poems I recited as soon as I could speak. Yet soon his focus turned to his three younger sons and crazy hours on call. As I got older, he grew more distant, barely noticing me.
I felt estranged as he dissected calves’ esophagi in our kitchen sink with my brothers, playing “The Disease Game” at dinner. (“Forty-two-year-old refugee vomiting blood,” Dad called. “Schistosomiasis,” my brother Brian answered. “Pass the potatoes.”) Dad poked fun at my squeamishness and confessional poetry. Yet he sent me to a private school for artistic kids, insisting he’d pay for any college and grad school I wanted. I picked a master’s in literature at NYU. When I decided to stay in the city, he said, “You’re doing this to spite me.”
After graduation, I married a great husband and landed a professorship and publisher for my books, thanks to help from a therapist. When I was 41, that shrink helped me stop smoking — the same year Dad quit. I also gave up booze, eluding all of Shirley’s curses. Still, when I posted a Throwback Thursday photo of my parents with Dad’s family in the 1950s, Facebook tagged the late Shirley’s young image with my name. I was mortified their algorithm couldn’t tell us apart. I irrationally feared our resemblance meant I was like her on the inside, too.
“Schedule another breast X-ray and a sonogram tomorrow,” emailed my brother Brian, now a 50-year-old trauma surgeon — Dad’s clone. “Don’t be an idiot.”
Like my father and Shirley, my connection to my close-in-age sibling was fraught.
“Could I be high risk from Dad’s lineage?” I asked Brian. “I read that only 5 to 10 percent of breast cancer cases are inherited.”
“Even if it’s malignant, you probably won’t die of it,” he responded.
“That’s your idea of reassurance?” I emailed back.
I scheduled an ultrasound with a New York oncologist. He’d insisted I follow Angelina Jolie’s famous footsteps by taking the BRCA genetic test to determine if I had the genetic mutation for breast or ovarian cancer. I kept postponing. I was a horrible patient, phobic of needles and medical procedures. An ace at avoidance, I’d dodged having blood drawn for decades. The $3,600 for gene testing was too expensive, I rationalized, unsure if my insurance would cover it. But really, I didn’t want to learn that having Shirley’s face meant I could share her fate.
New scans confirmed I had “suspicious calcifications.” The oncologist recommended Dr. Susan Drossman, a breast radiologist who ordered three needle biopsies. I went dizzy.
I blamed my medicinal meekness on my dad and brainiac brothers. Witnessing a myriad of misdiagnoses and mistakes daily, their early advice was: Avoid all hospitals, treatments and doctors (except for them). I was a tough tomboy, the opposite of a hypochondriac. Yet by my 30s, whenever I visited, Dad reminded of the importance of annual breast screening — “especially with your genealogy.”
Which traits were transmittable? Along with his brown eyes and hair, olive skin, and good feet, I was unfortunately heir to the Shapiro personality. Dad and I were quick-tempered, addictive, intense workaholics. I’d been petrified I might lose him when a near-fatal heart attack demoted him from doctor to patient at his own hospital. He retired his half-century career. He now walked with a cane and blood thinners made it hard for him to withstand cold. Winters, my parents migrated to Florida, Shirley’s haunting grounds.
I worried the farther distance would make communication more difficult. He lavished praise on Brian, who was raising four kids in Michigan, as Dad had, while trashing my liberal politics, creative profession, and adopted city (calling it “a dirty, scummy, terrible place”). Did he see me as a failure? I wanted to please him before it was too late. We got along best when there was something physically wrong with me he could fix.
Trying not to freak out, I called Dad and Brian for advice about Dr. Drossman’s order of three biopsies. They insisted I go. I got through it with help from my husband, Xanax, and Dylan music blasting into my earbuds. The procedure left my chest black and blue for six weeks. The results indicated “Lobular Carcinoma In Situ” (LCIS) which, Dr. Drossman explained, translated to a higher breast cancer risk.
“Twenty years ago, this meant double mastectomy,” Brian said over the phone. Dad had obviously passed down his blunt bedside manner.
“Get the damn BRCA testing,” Dad said, mailing me a check, in case my insurance wouldn’t cover it.
“I took the tests. I’d have my daughters get them too,” Dr. Drossman admitted. “Many women in their 20s get genetic testing now, especially with cancer in their family. It’s smart and empowering to know your genetics and take control.”
I couldn’t evade the terror any longer. I scheduled a simple blood test to face down my heredity. In the mirror, I delineated my 53-year-old features. My nose and high cheek bones were maternal. My mother’s mother, Grandma Sophie, had hair the color of black bread, like mine. She never had breast cancer. I prayed I was like her.
“She died of leukemia at 48,” Brian reminded me.
He had me download an app to determine the probability of what would kill me. I acquiesced, though each query unnerved me.
- Gender & Religion: Ashkenazi female (higher risk),
- Paternal Grandmother: Breast cancer at 45, recurrence at 60 and 65, death.
- Paternal Aunt: Breast cancer at 45, recurrence at 49, death.
- Childbirth: None, like Shirley. A bad sign, since breast feeding decreased the risk of several cancers, thus increasing life span.
I was confused why adding in my recent biopsy made it less likely I’d be afflicted.
“Because the tests came back negative,” Brian explained.
“Cool. I’ll add all three biopsies,” I said, jumping into the Shapiro’s “Disease Game.”
“Don’t, it was all one-incident,” he decreed.
“What if it wasn’t?” I asked, such a control freak, that I was attempting to manipulate the odds of my own death app.
Unfortunately, the oncologist requested a fourth “excisional wire biopsy.” Bad sign! This would entail getting a needle stuck in my breast at the radiologist’s office and then — with the needle taped on — traveling 50 blocks to his hospital for the minor operation. As the doc described it over the phone, I laid on my floor, shaking. I wanted to wait until after my classes ended in December. “Why can’t a radiologist and surgeon do the excisional test together?” I asked Dad.
“Your brother’s cancer center does it that way. Fly to Michigan for it.”
“But you’ll be in Florida.” I suddenly lamented that I’d never been in the Midwest without my father.
“Then I’m flying back to Michigan to be with you!” he said.
Picturing 80-year-old Dad, with his cane, struggling back to his freezing hometown in winter to take care of me made me cry. Unable to save his sister or mother, he was determined to rescue his only daughter.
Luckily, he didn’t have to. Two weeks later, I learned I did not have the cancer gene mutations. A new Journal of The American Medical Association study showed that biopsies — like the three I had — were less reliable than thought for diagnosing breast abnormalities. I was confused. I wasn’t alone. Out of 1.6 million U.S. women biopsied, 20 percent had cancer (some slow growing). Ten percent were atypical but not cancerous, like me. At least so far.
As Brian explained the studies, decades of animosity melted to gratitude. Instead of my competition, my oldest brother seemed like a brilliant present from my parents. I saw why Dad was so impressed. Brian had become his extension, protecting us when my father no longer could.
“Thank God you’re OK,” Dad said. “I was so nervous.”
“This doesn’t mean you won’t get another cancer,” Brian said. “You’re still higher risk than average.”
“Sue’s BRCA results are negative. Brian says we’ll monitor,“ Dad emailed Mom and my other brothers, my bosom now the entire family’s business. My rack hadn’t garnered this much attention since junior high.
“She’ll have more scans in six months. We’ll get preapproval from the insurance.” Dad sent everyone updates.
I liked the “we,” as if my bruises hurt him, the way the impairment of his heart had weakened mine. Relieved that for the time being I’d evaded the internal flaw plaguing my dad’s female relatives, it turned out my medical scare came with a blessing. For the first time I felt sure that I did have his love.
“I’m not like Shirley,” I reminded him.
“You are. My sister was brilliant, sharp, funny as hell. She could have been anything. She was smarter than me. That’s what I meant,” he explained. “When you were born, I promised you’d have a much better life than she had.”
Because of my father, I did.
Susan Shapiro is an author and writing professor at The New School in Manhattan. Her new novel “What’s Never Said” comes out in August. You can follow her on Twitter at @susanshapironet.