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My legacy to my daughters: BRCA and cancer?

The wishing well. (Lorrie Goldin)

The nightmares I’d envisioned for my daughters all involved harm coming from the outside—being snatched by a stranger, raped while crossing campus, killed by a drunk driver. I never imagined it would be me bringing terror into their lives. Then I was diagnosed with a rare and aggressive type of uterine cancer.

Luckily, it was detected early. I would undergo chemotherapy just in case, losing my hair but not my life.

This cancer, though, was only the prelude.

The doctors, noting the unusual cell type and Ashkenazi Jewish ancestry on my father’s side, suspected the BRCA mutation. This genetic defect places carriers at high risk for breast and ovarian cancer. It’s what leads some women, including Angelina Jolie, to surgically remove their healthy breasts and reproductive organs to reduce their cancer risk.

Sure enough, the blood test came back positive. I had a 50 to 85 percent lifetime risk of breast cancer, a 50-50 chance of having passed the mutation onto Emma and Ally, and a 100 percent obligation to tell them.

I felt doomed. Even worse, I’d doomed my daughters. It had been bad enough telling them about my uterine cancer. Ally, about to head off for her senior year in college, had burst into tears. Emma, three years older and working in Russia, turned lifeless in the grainy Skype image, as if somebody had pulled the plug.

“I feel like I’m on another planet,” she’d said at last.

Yet they didn’t know the half of it.

I dreaded breaking the more difficult news: Because of me, Emma and Ally might be at grave risk. How could they possibly cope with such a burden before they even had real jobs and homes, decent health care, or partners? Not to mention the impact BRCA might have on when and whether to have kids.

I would have given anything not to tell them at all. But Maya, the genetic counselor, had gently persuaded me of their right and need to know. Since this was not the kind of bomb that could be dropped via Skype, my husband Jonathan and I would need to tell Emma and Ally during the few days they’d both be home for the holidays.

I didn’t want to ruin Christmas. But I also wanted the news to belong to the cancer-clouded year that was ending–as if it would vanish when we threw away the calendar. So toward the end of brunch mid-way between Christmas and New Year’s Eve, I forced myself to say, “There’s something we need to tell you.”

Ally had just put a piece of coffeecake in her mouth. Looking stricken, she said, “Is it going to make me throw up?”

“Let’s hope not,” Jonathan responded.

Genetic testing, I explained, had revealed a mutation that put me at high risk for breast cancer. I stressed that I was being closely monitored, and was fine.

“What about us?” Emma asked.

Somehow I choked out the truth, or at least the partial truth. I did not mention that some women removed their ovaries, cut off their breasts. Emphasizing the wonders of medical advances, I casually tossed off numbers: A 50-50 chance of inheriting the BRCA mutation; screening beginning at age 25; a 50-85 percent risk for getting breast cancer.

“I’m glad to know it isn’t 100 percent,” Ally said, picking up her cake. “When can I get tested?”

Emma, however, did not want to know her status. “Unlocking our genetic codes–,” she said. “Where does it lead?”

Neither expressed concern about my risk. Instead, they started squabbling about which of them had inherited the mutation. Emma was sure at least one of them would be BRCA-positive. “You might both test negative,” I rushed to point out.

Secretly, though, I was as sure as Emma that we wouldn’t be that lucky. Might one escape? Would they both be afflicted? And which prospect was worse?

The old year left, the New Year came. Before meeting with the genetic counselor, the girls were required to watch an online video about BRCA. Neither responded to my attempts to talk about it. Ally disappeared into her room. Emma remained seated for a long time, looking glum.

“Why would anyone want to know?” Emma finally demanded. “Why not just wait until you get cancer, and then deal with it?”

“Do you wish I hadn’t told you?” I asked.

“Yes!” Emma replied, then began to cry “What good does it do to tell a young person this? It’s awful to know! I’m just going to have a kid, then be dead when I’m 36!”

“You’re not going to die!” I insisted. But since I had inflicted this curse, perhaps I had no right to reassure her.

When Ally came downstairs to say goodnight, I asked how she was doing.

“Okay,” she replied. “How’s Emma?”

I repeated what her sister had said about having a child and dying at age 36.

“Yeah,” Ally said, “That’s how I feel, too.”

The next day the sky was that clear-crisp blue a passing storm leaves behind by way of apology. It was also the day Emma and Ally had their appointment with the genetic counselor. We decided to distract ourselves by first going to San Francisco’s Japanese Tea Garden. The girls and I chatted over jasmine tea and sesame cookies as if everything were normal. Emma and Ally scampered to the top of the circular bridge like the mountain goats they were when they were little. Then we came upon a small bowl-shaped basin filled with water: a wishing well. The girls lobbed coin after coin, missing every time.

“Let me try,” I said, knowing how hopeless my wild-armed pitch would be. We had one penny left. “Please . . . ,” I prayed, then let the coin fly.

It landed in the watery center of the basin.

Soon we had to leave for their appointment. Maya ushered Emma and Ally into her office as I pretended to read in the waiting room. An hour later they emerged. Ally looked miserable, while Emma and Maya chatted about Russia.

On the drive home, I asked if they thought Maya was biased one way or another about getting tested.

“I’d say she’s pretty balanced,” Emma said, “But she definitely leans against testing.”

“You’re an idiot,” Ally remarked. “She’s clearly in favor of it. You’re just hearing what you want to hear.”

Perhaps wanting to hear some concern about me, I asked if they worried about my risk.

“No,” said Emma, “You’ve had your cancer.”

As if it was a case of the chicken pox granting lifetime inoculation. But I knew what Emma meant: You’ve had your marriage, your babies, your 57 years of blissful ignorance. You’ve never had to think of whether you’d tell a guy on the first date or tenth that you might need to cut off your breasts or be unable to bear children or die young.

That night, Emma sobbed inconsolably again. “I’d do anything not to know this!” she wailed.

I tried to comfort her by rubbing her back. Emma slid away from my reach, cried harder, and began tearing apart the Kleenex box. “Don’t do that!” I snapped. Emma stopped for a bit, then shredded all the tissues before retreating in tears to her room.

“This is unfair to me, too!”  I yelled through the slammed door.

That night I awoke to the sound of muffled weeping.

Emma sat clutching her teddy bear, rocking back and forth sobbing. This time she accepted my offer of a back rub. I kneaded through Emma’s tense muscles and layers of sorrow until she quieted. We talked about her upcoming move to New York, and after a long while she was ready to say goodnight. I wondered if Ally was asleep or lying awake disconsolately in her room, but she didn’t stir when I peeked in.

Massive upset subsided into life that looked almost normal. Ally threw herself into her last semester of college, then took the BRCA test when she came home for the summer after graduation. As we waited together for Maya to call with the results, we again tried to influence fate with coin tosses. Heads, you win; tails, you lose. My quarter kept landing on tails, but Ally flipped heads.

The phone rang, and we froze.

“Yes?” I heard Ally falter, then, “Oh, thank God!” as she began to cry.

We screamed and hugged, high-fiving the good news.

Emma, meanwhile, had moved to New York and turned 25. She still did not want to know her BRCA status.

Neither did I, really. Much as I wanted to believe the wishing well, I doubted they’d both test negative. What if Emma—so like me in looks and temperament—shared my genetic fate? I couldn’t bear knowing. Or not knowing.

But it was not my choice to make, and Emma didn’t want to find out. Nor did she want to talk about it.

Honoring her wishes, I didn’t push. Was it out of respect or cowardice?

Emma would soon age out of our insurance coverage. Although unwilling to take the BRCA test, she had agreed to undergo surveillance in case she’d inherited my mutation. The first step was getting her baseline breast MRI. Appointments were hard to get, and Emma kept stalling. Urgency mounting, I summoned my courage. “I’m afraid you’ll fall through the cracks after the insurance window closes,” I beseeched Emma. “You need to do this now.”

The next day she made an appointment.

And so we watch and we wait.

What legacy do we bequeath our children? My father passed on the BRCA mutation to me, but he also passed on a rich heritage of love and security. That’s what I have given our daughters, along with blonde hair, a dog they wanted and I didn’t, high-fives, and backrubs in the middle of the night.

Lorrie Goldin is a psychotherapist and writer in the San Francisco Bay Area. She blogs at Shrinkrapped.

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