by Lizzie Stark
We had a beautiful ceremony and an even lovelier fortnight in Rome and Florence four months later. I was out of excuses.
I found an oncologist, a kind man with a ready smile and a firm but not-too-firm handshake who seemed able to deliver the facts without doing so brusquely or condescending to me. I met him once, and then on my second visit, he drew my blood. He’d asked me what I’d do if I learned I was positive, and I’d vaguely replied “lifestyle changes,” thinking perhaps I’d drink less or exercise more or eat less meat. I felt I had to know, though, whether my worry was reasonable or whether I’d been an unknowing hypochondriac.
He said it would take two weeks to get the results of the simple DNA test performed on my blood. My mother had done the hard work all those years ago—technicians had sequenced large sections of her DNA in order to figure out whether she carried one of the many cancer-causing mutations. For my test, the scientists at Myriad Genetics would simply perform a spot-check of my DNA to see if my gene matched my mother’s. Since my father’s family doesn’t have a strong cancer history, we assumed his genes were fine. My mother had one broken gene and one normal one and could have passed either on to me, so I had a 50 percent chance—a coin toss—of having two normal copies instead of one with the cancer-causing BRCA mutation.
I spent the next two weeks of that July on pins and needles. Of course I wanted the test to come back negative. I’d seen the menu of options offered to BRCA women, and given a choice, I’d prefer to eat at some other restaurant. If I had my mother’s BRCA mutation, I could continue intensive surveillance to catch cancer early, carve out my breasts and ovaries, or undergo hormone therapy that would put me in temporary reversible menopause but buy me a few years to make a more permanent decision. Given my druthers, I’d pick option two: not having the gene.
At the same time, testing positive felt inevitable. I was my mother’s daughter, wasn’t I? Dealing with the family legacy of cancer felt like part of who I was, and if I tested negative, that legacy would be ripped away from my identity. I’d be excluded from the heritage that inscribed “Long life isn’t guaranteed” onto the psyches of our family. I’d simply become normal.
I felt weird. I really, really didn’t want to test positive, but a negative test would negate part of my identity, and a small messed-up part of my brain would feel like a disappointed drama queen. During the weeks I waited, a friend called, and I tried to explain my fears of having the genetic mutation. “My aunt just died of breast cancer,” she told me. “If you have the gene, you’ll just cut them off. So much better.” In the midst of her own worse grief, she said it flippantly, in a way that suggested that removing my breasts would be a pragmatic move, as if it weren’t a big deal. I hung up soon after.
My mother held out hope that I’d be negative. After so many women in our family had suffered, surely I’d be spared. “When I heard you were going to get the test,” she said, “I thought, ‘Oh, this is so valuable to do,’ and I was really convinced that you wouldn’t have it. I didn’t really consider the possibility that you might have it, even though intellectually I knew it.” A lifelong Lutheran, she’d prayed about it. When we spoke on the phone, I’d talk about what I would do if I were positive, and my mother would remind me that I still had a very good chance of dodging the whole issue with a negative result. She told me that if I tested negative she’d be in the car in an instant, on her way to see me, with champagne in hand. And if I tested positive, well, she’d be in the car with something chocolate and creamy.
On a Thursday in July, one of George’s friends dropped by our tiny apartment to pick something up and visit for a while. My phone rang with an unknown number. I almost didn’t pick it up. “You should get it,” George said. “It might be those results you’ve been waiting for.” He raised his eyebrows meaningfully. I’d almost forgotten about the genetic test that week, but now I flew to pick up the phone. It was my oncologist, so I went into the bedroom for privacy. He softened the blow right away with, “I’ve got the results, but I’m afraid they aren’t the ones you wanted.” I sat down on the bed. I had the same gene my mother and grandmother had. I felt numb, shocked. I should tell someone, I thought. I should tell George. But we had company. I tried to make my face neutral and walked into the living room. I didn’t want to make our visitor uncomfortable, but I couldn’t suppress this life-changing news either. I’d make myself calm. “That was the doctor,” I said. “I have it. I have the gene.” Saying it made it real, and my voice cracked. “You barely got that sentence out,” George remembers, “because you had already started to cry.” I immediately fled to the shower.
It felt safe to weep in the shower, safe to be alone, safe to be with my body for one of the last times. In my bones, I knew that eventually, ideally some day far in the future, it would be all over for me and my breasts, but I didn’t want it to be. I loved my breasts. I loved having them attached to my chest rather than lying in a lab somewhere. The thought made me protective of them, and I held them in my hands. They felt soft and vulnerable and like part of me—not part of my body, but part of me. Though I had them in my hands now, some day they’d have to go. My husband came into the bathroom, sat silently on the closed toilet, and watched me shake.
I knew that if I talked to my parents, I’d become hysterical, so I texted or e-mailed my father—neither of us can remember which—and he broke the news to my mother, who said it was “the worst day of my life.” “It was just awful when you got the news. I just started shouting no, no, no.” She went down into the basement to hide her cries from my father and paced and wept and shouted for an hour. “I just couldn’t believe it,” she tells me more than three years later. “I was so upset. I just felt sick to my stomach and just really felt so awful.”
Over the coming months she would revisit her own breast cancer diagnosis from the perspective of her own parents. They’d been out of the country on vacation when she received the news, and she hadn’t wanted to worry them so she’d waited for two weeks until they returned to let them know. “I realized how hard it is to see your child go through something so difficult. It was just awful, Lizzie,” she tells me.
In BRCA families, these little generational realizations seem to happen a lot.
After her hour in the basement my parents consoled each other, and my mother says, “[we] wanted to talk to you right away just to hear your voice.” I don’t remember the phone call or what George and I did afterward. But it felt like nothing would ever be all right again.
6 | Watchful Waiting
The day my grandpa died, I went for a mammogram. The death of my father’s father hadn’t been entirely unexpected. He’d been suffering for ten years from aphasia—memory loss—that affected the language center of his brain. First his keen eye for crosswords went, then his ability to read and remember our names. If he needed a spoon for his ice cream, he’d mime it. By the end, he was hardly able to speak at all, lost in a sea of experience unmoored from language. He had been an engineer, a navy officer, and an intellectually curious man. It was horrible to watch. We suspected this strange aphasia, which wasn’t Alzheimer’s, had some connection to his work overseeing the unmanned drones that flew around nuclear explosion test sites in New Mexico, which he watched without protective gear. Maybe it was true, or maybe we just needed a romantic story to explain, to justify, to make sense of what unfolded before us. My grandmother cared for him deeply, fulfilling what she saw as her duties as his devoted and loving wife without complaint. She spent the last decade of his life bathing him, shaving him, giving him medication for prostate cancer, lifting him when he fell, and generally administering to his needs as he slipped away from us. Until the very end, he maintained his perpetual good humor—he’d often smooch my grandma, because he loved her. He had occasional moments of clarity—not marked by speech but by a sharpness in his eyes that made you certain he could understand what you were explaining to him. Though he had not been particularly musical in life, as he declined it was one of the few
ways we could connect with him, so around the Thanksgiving table we would sing “From the Halls of Montezuma,” which he remembered from his stint as an underwater mine disposal expert during WWII. He responded to us in spirited gibberish that told us that even now he wanted to participate in our lives, that he loved us and appreciated our singing.
I learned of my BRCA mutation on a Thursday evening, the day after my grandpa became ill with possible pneumonia. It was clearly the end, so my parents went down to Tennessee that weekend to sit with the other relatives and watch Roscoe, who was Gov to his grandkids, die at home in his bed. I had been invited, of course, but I couldn’t go—I didn’t think I could bear to watch this up close while still reeling emotionally from the genetic news. Over the weekend, he took a turn for the worse. And so, the following Wednesday morning, I got the call. “He’s gone,” my stoic father said, voice cracking. I’d only ever seen my father cry once, when we watched Goodbye, Mr. Chips as a family in my teens, though my mother swears he cried at my birth too.
That afternoon, out of respect for my grandpa, I put on all black, not knowing that it marked the beginning of a fashion era for me, and jumped into the car to head to my mammogram. I had thought about cancelling but decided against it; I was simply too nervous about my BRCA diagnosis, and this would be my first mammogram in several years. Of course, my grief added to my already-fraught emotions about the procedure, and today, nothing would go well for me. For starters, the woman at the front desk explained to me that they didn’t do mammograms on women as young as I was then—twenty-seven. “But I have the gene,” I managed to force out. “My mother got cancer at thirty.” If the women in my family had waited until the recommended screening age of forty, they’d all be dead. “No exceptions,” the receptionist said. She noted that my new insurance company hadn’t approved the procedure and pointed me to the phone in the next room. I teetered on the verge of hysteria, could feel myself protesting ever more shrilly, could feel my eyes well up. I would call the insurance company in the next room. I rifled through my purse for my insurance card only to discover that in my wrought emotional state, I’d left the house without my wallet. Of course. Even if I could somehow work this out without my insurance card, I couldn’t pay my part of the bill. I stalked back to the car and scrounged in the cushions for enough money to pay for parking—in my haste to leave the office, I hadn’t validated my ticket.
So began a frustrating, emotionally taxing experience that often involved arguing for the necessity of mammograms and MRIs despite my young age—what part of MY MOTHER GOT CANCER AT THIRTY did these people not understand?—an insurance preapproval process that was never fully explained to me, and often being treated as a crazy hypochondriac by the people doing the screening. I felt like I was losing my mind—it was so much paperwork and arguing that I could barely focus on the details of what I was supposed to be doing to understand my various scans.
One might imagine a treatment center geared to people like me, where I could simply go in every six months for screening and get all the tests at once. It would be like some sort of rational paradise where I only had to spend two hours a year on this genetic condition. Instead, I had to patch together my own treatment, managed largely by institutions that were not accustomed to BRCA patients and their surveillance needs. I’d even heard horror stories from other women about doctors who weren’t as informed about BRCA as they should have been, doctors who told them that a family history of cancer “didn’t count” if it was on their father’s side, or who were not up to date on the surveillance protocol. And by the way, BRCA women are supposed to have a whole lot of surveillance. It involves a battalion of doctors—by the time I’d been through it once, it seemed like I’d been felt up and fingered by every clinician in the state. According to the National Comprehensive Cancer Network (NCCN), an alliance of twenty-five of the world’s leading cancer centers that publishes standard of care guidelines for many sorts of cancer-related treatment, among them, surveillance for BRCA patients, if you want to keep both your breasts and ovaries, then you must scan the ever-loving snot out of them, though to be fair, not even medical professionals have much enthusiasm for ovarian screening. Once or twice a year, a professional should feel you up for lumps. Once a year, your breasts get squeezed tightly between two plates while radiation is shot through them to make a picture—a mammogram. Because many BRCA patients receive screening while they have young, dense breasts that are hard to read via mammography, and because MRIs are a more sensitive scan, you’re supposed to alternate mammograms with MRIs. Preferably, each MRI happens on certain days of your cycle and involves having dye pumped into your veins while you lie prone in a giant tunnel with all your body jewelry taken off while the loud clicks of a magnet get pulsed through you. As it turns out, I am one of the unlucky few with an allergy to the contrast dye used, which means I have to take steroids on the day of, or occasionally a pretty intense dose of Benadryl, which addles me.
That sounds like two trips to the doctor: one for a mammogram and one for an MRI, right? Wrong. It’s four—two trips to the oncologist who feels me up and orders the tests, and then two to the lab to have different sorts of beams shot into my breasts. Of course, if they find any “suspicious” areas—and the more you scan your breasts the more likely this is—then you have a breast ultrasound, where they squeeze jelly over your boobs and glide a wand over them, using sound waves to look inside. Sometimes this happens at the same time as your other appointments. Worst case scenario is that you have to make a new one.
According to oncologist Dr. Otis Brawley, chief medical and scientific officer of the national health organization the American Cancer Society, part of the reason for this surfeit of appointments lies in how doctors get paid. “I treat patients with cancer,” he tells me, “and this is actually a national shame. We see the patient on Monday, [and] write their chemo orders to be administered on Tuesday, because if the chemo is administered the same day we see the patient and write the chemo, we get paid less.” Similarly, he says, if I were to go to a high-risk clinic and see multiple doctors on the same day, my insurance would pay as if it had been a single visit—all the doctors would be splitting the reimbursement. It’s not efficient, and it’s certainly inconvenient for patients, but it’s the way the system currently works. My rational paradise does not exist in part due to bureaucratic red tape.
If they do find something inside your breasts during an exam, often they don’t tell you at the appointment either. They’ll simply say they want to look a little closer and then get back to you days or weeks later. During that time, you wonder whether you screwed up on this round of Russian roulette—the ten-bullet gun has as few as four or as many as eight or nine rounds in it, after all—and whether this time there will be something in the chamber when you pull the trigger.
If breast cancer surveillance in BRCA patients is an exercise in anxiety, then ovarian cancer surveillance is an exercise in futility. Doctors have limited tools—a physical pelvic exam, a transvaginal ultrasound, and a blood test—that have not been proven effective in catching ovarian cancer or in preventing death from the disease. Still, like many other BRCA patients, I go through the motions; surely doing something is better than doing nothing. My gynecologist doesn’t seem to think the screening tools are worth it, but I make her screen me anyway. I want that lubed-up wand up my vagina, peeking around for tiny cysts, even though every time I go in the technician meets me with questions—“Why are you even here? What is the reason for this ultrasound?”—leaving me to ponder her apparent judgment of my sanity. Am I crazy for using an imperfect test to screen for a cancer that is rare in the general population? Or is the medical profession gaslighting me? Am I really a hypochondriac, or do this doctor and this technician just not understand the risk I face, why I want my blood drawn even though the substance they test for is only produced by certain types of ovarian cancer and can fluctuate for other reasons, like stress or your period?
NCCN recommends getting into
a study on ovarian surveillance in high-risk women, because there is not enough data on this, but my gynecologist is focused on delivering babies, not on catering to whiny women like me. Since my ovarian surveillance comes through her, though, that’s another three to four appointments a year—for some reason I can’t have my ultrasound during my yearly Pap smear and have to come back for another test. We argue about blood draws too—she thinks they’re useless, while according to my research, the efficacy of doing these every six months for high-risk patients has not been evaluated yet. Sometimes I’ve used up all my arguing points on the biennial ultrasound though, so I succumb to her wishes and skip it. This is one of the horrors of BRCA—the fear that you might know more about BRCA than your doctor and not get the care you need if you follow her advice, balanced against the fear that you’re paying her for her expertise, so she probably knows more than you do, and that you might be acting like a crazy, high-maintenance bitch. This is why specialists get paid the big bucks.
Altogether, that’s a minimum of seven trips to the doctor each year for screening—sometimes more if you need an ultrasound or a biopsy. This is in addition to any standard maintenance, such as going to the dentist or for a physical or to see specialists like an eye doctor, allergist, and so on. I don’t like to spread them out—I try to do them all in one or two weeks. But it is a lot of doctors’ visits, accompanied by uncertainty and anxiety around the test results. Watchful waiting has its price. The question is whether it’s worth that price, and when I looked into the issue, I found that the answer is surprisingly complex.
