People: Brush with Breast Cancer

Do I muscle through this condition, as I have other crises? Or is this disease really a gift, a reminder that my humanity deserves a line on the daily To Do list?

BY PAULA REYNOLDS, MBA '83

WHAT YOU HAVE IS NOT QUITE BREAST CANCER, but we need to take it out. Immediately." With that voice-mail message began a '90s saga only Lewis Carroll could fully appreciate. The electronic news was my idea if my surgeon couldn't find me. Listening to it, sandwiched between work and playdate requests, was another story. Only a week earlier I had dashed off for a routine, albeit three years overdue, mammogram. Suspicious looking microcalcifications led to more mammograms and a quickly scheduled biopsy in a local mobile unit.
       "Not quite breast cancer," I soon learned, was ductal carcinoma in situ, or DCIS; literally, cancer cells contained within the walls of the breast milk duct that are not invasive (that is, life threatening) unless they break through. Up to 16 percent of American women have DCIS, and until the recent widespread use of mammograms, most never knew it. One in four of us with DCIS will develop invasive cancer. But no one can predict who.
       Like so many women who hear any kind of cancer news, I was stunned. Eighty percent of us are in no definable risk category. We have no family history, follow diets reasonably low in fat, and get adequate exercise. I didn't even grow up in the United States, with its DDT and hormone-fed animals. My case is another mysterious statistic: an educated woman, living in Marin County, Calif., which reports among the highest breast cancer rates (although not death rates) nationwide.
       Within 48 hours of the news, and after both furiously dialing my network for information and reading Dr. Susan Love's Breast Book cover to cover, I had a lumpectomy. Unfortunately, that produced "bad margins," which refers to the edges of the sample that one hopes are clean of any disease. Faced with a recommendation to immediately have yet more tissue removed, I sought a second, third, and fourth opinion.
       You see, everyone disagreed about everything. The second pathologist didn't even see the same story under the microscope, as my husband and I learned late one Friday afternoon, with surgery scheduled the following Monday. We cancelled it. Subsequent surgeons and tumor boards, the hospital-based, multidisciplinary medical review teams that examine breast cancer cases, recommended everything from waiting 2 to 3 months for further limited surgery to a "skin-sparing" mastectomy plus reconstruction. Even on reconstruction techniques, the experts disagreed about both the solutions--simple saline implants or a bizarre-sounding "tunneling" technology that makes a new breast out of stomach muscle and fat or from a piece of your back--and their side effects. I found myself poring over plastic surgeons' before-and-after albums, reeling from choices that only two weeks earlier had never even entered my mind.
       Amidst the cacophony, I made the only choice I could live with: to buy eight weeks, heal from one surgery before undertaking another (whatever it was going to be), and contemplate a tidal wave of nagging questions.
       What to make of all this dissonance? After all, I am incredibly fortunate. Unlike so many other cancer diagnoses, DCIS is, by all accounts, nearly curable. Heck, one solution promises that secretly coveted tummy tuck, insurance paid! And, of course, unlike so many women, I am lucky enough to have access to excellent medical care, however much the experts disagree.
       Yet how can the medical community be so unsure about a disease that shows up in one out of five bad mammograms? Why have only a handful of research studies examined DCIS? Isn't there a way of addressing which DCIS patients will develop invasive cancer better than prophylactic- ally removing breasts, particularly when the trend with more lethal forms of breast cancer favors breast conservation?
       On a more human level, I wonder if I reasonably belong in a cancer support group. I feel like an interloper in many ways since DCIS is really only precancer. The fears and anxieties are there, nonetheless, with the prospect of such intimate and radical surgery. I find myself qualifying everything, clinically, as if to acknowledge that I appreciate how much worse off so many women are than I. Do I experience this whole episode quietly, stoically, or tell all to the kids, friends, and the community? I'm banking on the fact that my kids are incredibly intuitive, that friends will provide invaluable support, and that knowledge and power begin with sharing.
       But telling all isn't easy. Hard as I tried from the beginning to manage my kids' fears, their imaginations soared. Eight-year-old Julia screamed at five-year-old Charlie not to drink my bedside table water or he'd get cancer. Eleven-year-old Peter started hanging around while I talked openly on the phone, as if to assure himself I wasn't hiding anything. (It's the only time he can stand my long phone calls!) It's been particularly hard for Julia, both of whose aunts on my husband's side have survived invasive breast cancer. She talks about having all of our bad blood.
       Do I muscle through this condition, as I have other crises, like so many type A baby boomers who balance it all? Or is this disease really a gift, a reminder that my humanity deserves a line on the daily To Do list?
       At 43 years old, I am what a therapist has dubbed a "human doing." With three kids, a growing business, and community activities, I eat on the run, run when I can, intersperse business meetings with school plays. It's living on the edge, and I confess to loving it. But I've also always assumed an infinite future, betting that I inherited those maternal genes that saw my grandmother to 101. As I've watched my 73-year-old mother gallivant around the world, I've always figured there's time later to slow down. Suddenly, the equation has changed. Or at least, I'm waking up to it. Life has far more defining periods than I've lulled myself into believing.
      

One surgeon, a fellow GSB graduate, Laura Esserman, MBA '93, described the treatment options for DCIS as more about managing risk and lifestyle choices than choosing best medical practices. Sure, I can have a mastectomy and reduce the lifetime risk of contracting invasive breast cancer to 1 to 2 percent per year. Or I can take a more conservative surgical approach and increase that risk to 3 to 4 percent over the next five years, and 10 percent in ten years. Doing nothing, my chances may be as high as 40 percent of developing invasive cancer.
       Maybe there will be revolutionary breakthroughs in the next five years that are worth buying time for. Perhaps I unwittingly create even higher death risks for myself every day driving around in my car, with coffee and phone, utterly distracted. It's on that To Do list of mine to get actuarials about other medical and lifestyle risks I accept without question. And how do I factor into the calculation that I'm the mother of three young children who depend on me?
       It's slowly occurring to me that I have avoided managing all sorts of risks of late. It isn't hard to figure out that my parents, with whom I am very close, will likely remain healthy and active only another decade at most. My kids will start leaving the nest in seven years and lose interest in my attention much sooner than that. What am I doing to manage that exquisitely predictable risk that unique opportunities in my forties simply won't come around again? One DCIS mom put it to me this way: "Sure, you hug the kids, swear to slow down, drop a few activities, and kick back into turbo in short order." What do those of us lucky enough to have this second chance really change?
       I know I'll always be a whirlwind, but maybe I'll try putting my own physical, emotional, and spiritual health on that To Do list. I guess the airlines are right when they tell you to put your oxygen mask on first-- before the kids'--in an emergency. It used to feel counterintuitive not immediately to reach to others. Just maybe I'll live a few more minutes in the present.
       I'm struck by the simple notion that my medical choices, like so many of my everyday, incremental decisions, are indeed choices that I have the power to make.

IT WAS A YEAR AND TWO MORE SURGERIES ago that I agonized over these questions and choices. Today, I'm a little smaller, immensely grateful for my medical care, and more bruised by insurance battles than stitches. Nothing was easy, though. One friend, upon hearing my story, aptly termed our brave new world of medicine "self-managed," not managed, care.
       Ultimately, I put myself in the wonderful hands of Dr. Esserman, director of the UCSF Breast Care Center, who had talked about managing risk. And I opted for the more conservative strategy of well-timed, repeated lumpectomies until we got good margins. I gave blood and time to any research project that would take me and put my faith in near-term technological breakthroughs that might mitigate the chances of recurrence. I even found a DCIS support group, in which six of us, all with similar diagnoses, could seek solace without apologizing for our good luck.
       But what's been the real impact of this Alice in Wonderland experience? I've grown comfortable with shades of gray over black and white and indeed have come to expect them. I feel a lot more vulnerable, which isn't all bad, having peered over the other side of statistics. I know the wisdom of trusting my instincts and fighting for my needs. I stand in awe of my children, who learned to take life and all its twists and turns in stride. I won't forget anymore my routine preventive health checks. And I do live just a few more waking moments absolutely present.