I Wasn’t Supposed to Get Breast Cancer

The lump is small. It’s easy to miss if you aren’t looking for it. My primary doctor, my radiologist, and my oncologist will all confess they wouldn’t have noticed it if I hadn’t found it. Later, we will all be surprised to discover it’s over two centimeters in diameter, which will put me in Stage II.

I find it on a Saturday morning in late September. I’m fresh out of the shower and trying to get dressed, while my daughter, a giggling, boisterous toddler, is playing hide-and-seek under my bedcovers. An ordinary Saturday morning. I am 42 years old.

As I dress, I feel a stabby little pain in my right breast. Instinctively, I prod where it hurts. I’m pretty sure I feel a lump. I prod again. Definitely a lump. I don’t remember feeling it before. But like any woman with breasts, I know that lumps can sometimes come and go, and are often nothing to worry about. I also know that pain isn’t usually associated with anything serious; the serious things don’t come with obvious warnings. And as it happens, I have a scheduled physical in a few days. I decide to put it out of my mind until then, and the stabby pain mostly goes away.

One week later I am in a hospital, having tests. The mammogram is very thorough, and it hurts. A lot. In the ultrasound room, the doctor runs the wand over my right breast and a small dark mass appears on the screen. He carefully observes and measures it. A different doctor performs the biopsy, fitting a drill-like instrument inside a hollow needle and excavating thin ribbons of breast tissue from the mass. It hurts a lot, too. A titanium marker is placed inside my breast, in the biopsy spot, and I’m given a second mammogram to document its location. It’s a long day. But through it all, I am calm, even cheerful. I know lots of people who’ve had biopsies, and the vast majority—around 80 percent—turn out to be benign. I’m not worried. I crack jokes with the doctors and technicians, who all remark on how well I’m “handling this.”

Between procedures, I sit in a flimsy johnny in the waiting room, leafing through magazines. By late afternoon, I notice that everyone who was waiting with me is gone; even those who came in after me have already been seen. I’m the last one left. Despite all this, it never occurs to me that they’ve found something.

Finally, at the end of the day, I’m called into an exam room to meet with the radiologist. He has picked up on my obvious lack of concern, and he seems to want to impress upon me that the time for jokes is over. “I just want you to know,” he says, “that I think there’s actually a very good chance this is cancer. I just want you to be prepared for the possibility.”

He waits for his words to land. And at last, it gets through to me, what has happened here today. It gets all the way through, piercing me like a gunshot, stopping me cold. I am not prepared for the possibility. I don’t even know how to prepare for the possibility. I don’t remember anything else he says. I don’t remember how I get home from the hospital. It’s a Friday afternoon. I won’t have the biopsy results until Tuesday morning.

I spend the next three straight days on the sofa with my laptop, reading everything I can find about breast cancer and scaring the ever-living crap out of myself. Things I learn: The younger the patient, the more aggressive the breast cancer tends to be. And it’s very possible to go through treatment and think you’re cured, only to discover, some random number of years or even a decade later, that your cancer has secretly metastasized and you are going to die. The internet is full of worst-case scenarios, and light on boring stories of women who have been treated successfully and gotten on with their lives. Though common sense tells me not to do this, I keep reading the worst-case scenarios until I’m overwhelmed and terrified. I tell myself I just need to be prepared for the possibility.

At 9 on Tuesday morning I’m awake but still in bed, playing with my daughter. My husband is dressing for work. When the phone rings, he sits down on the edge of the bed, necktie in hand.

“I’m afraid I have bad news,” the radiologist says.

I press the phone against my ear, trying to absorb this information. I feel my life begin to divide into everything that happened before this minute, and whatever will come after it. As the new reality slowly sinks in, one thought manages to crystallize and float to the surface: my daughter is only two and a half years old. She might not even remember me.

On my bed, my daughter has stopped playing. She is watching me. Small children are exquisitely attuned to their parents’ emotions, and she is locked into my frequency. It’s as if she’s read my mind.

“Mommy? Why you making that face? The alarm in her voice is agonizing. “Mommy’s making a bad face. Stop making that face.”

My husband lifts her up and whisks her out of the room. “Mom’s okay,” he murmurs, cuddling her. “She just got a bad phone call. But she’s okay. Everything’s okay.”

I hang up the phone, sit in my bed, and wait for someone to tell me everything’s okay.

*****

A cascade of treatment decisions begins to unfold like a high-stakes board game, a series of best guesses about the strategy needed to make it all the way through and win. The first decision: lumpectomy or mastectomy? After surgery, I will have more detailed information about how likely my cancer is to recur, but of course I will have to make the surgical decision before I have that information.

Given my family history of breast cancer, which I don’t fully piece together until I start talking about it—my mother, her brother (yes, male breast cancer is a thing), and an aunt on my dad’s side, twice—my surgeon recommends testing for all known BRCA mutations, so I can make an informed decision. Everything turns up negative; though it seems to defy logic, I have no known genetic predisposition for this disease. I also have no other areas of concern in either breast, aside from the one we now know about. Research shows that my prognosis will be the same for either procedure, but a prophylactic mastectomy means peace of mind, and a free pass to avoid annual mammograms and MRIs. It’s hard to ignore the appeal of this.

I consult with a plastic surgeon, who explains what’s involved in mastectomy and reconstruction. Reconstructed breasts can be made to look great, and they’ll be perky forever. But they have no sensation, no feeling whatsoever. And the procedure itself is long and can be quite painful, with a series of tissue expanders placed beneath the skin to help prepare the breasts for implants. Nipples can sometimes be spared, but if not, they could be tattooed on. Simulacra.

I like peace of mind, but I also like my actual breasts. They’ve given me pleasure, they’ve nursed my daughter, they’re part of my identity as a woman, and they’re one of the few parts of my body whose appearance I feel pretty good about. That they would be stricken in this way seems pointedly unfair. Given the equal odds in my case, I decide to keep my breasts, even if it means regularly making sure they aren’t trying to kill me.

There are more tests and scans, of my bones, my lymph nodes. In preparation for treatment, I’m permanently tattooed with markers that will be used to position the radiation machine, four tiny blue dots. They look like stray ballpoint pen marks. I keep wanting to rub them off.

Here’s how a lumpectomy typically goes: You have surgery, and if the excised breast tissue has clean margins, and the cancer hasn’t invaded your lymph nodes, you have radiation to kill any remaining cancer cells lurking inside the breast. If it is discovered in your lymph nodes, you will likely have chemo before the radiation. But even with clean lymph nodes, you may have chemo anyway, depending on a variety of factors, including something called an Oncotype DX score. The medical equivalent of a crystal ball, the Oncotype DX is a genetic test that determines the likelihood of your actual, specific tumor to recur, and tells you whether or not the benefits of chemo would likely outweigh the side effects. My result shows I have a low risk of recurrence, and that chemo likely wouldn’t be of much benefit … but my score is, maddeningly, at the upper end of the “low” range, which makes my treatment slightly less clear-cut. Chemo is offered to me as an option—again, for that elusive peace of mind—but I decide to trust the crystal ball, and opt out.

After your lumpectomy, for the next five to ten years, you will most likely take an estrogen-suppressing drug to deprive any remaining cancer cells of their hormonal fuel. If your tumor tests positive for the protein HER-2, you’ll be given drug therapy that targets that protein. You might also be told to consider removing your ovaries, or to take medication to suppress their function for a while, as I do, to further reduce the circulating hormones that could fuel tumor growth. But the bulk of the treatment is the surgery; everything after that—chemo, radiation, and pills—is what my oncologist calls “sweeping up.”

Many breast cancer patients have treatment and then go on to live long, cancer-free lives. But sometimes, over time, stray cancer cells that haven’t been swept up manage to find a foothold elsewhere in the body, often in the brain, lungs, and bones. Breast cancer is notoriously unpredictable. As I study survival statistics, I begin to realize that being “cured” of this disease really just means living long enough to die of something else before the cancer finds a new place to roost. One isn’t cured so much as one outruns it: You win the high-stakes board game by getting to the end of your life before the cancer does.

A lumpectomy, though performed as an outpatient procedure, is major surgery, and it takes me a surprisingly long time to recover. Leaving the house for short trips exhausts me. Friends bring me casseroles, for which I am deeply grateful. Weeks later, the radiation causes a painful, nasty-looking burn on the flesh of my right breast. It’s bad enough that we have to temporarily stop treatment to allow it to heal. I cover the burns with ointment, gauze and tape, delicately, like I’m tending a wounded soldier.

The nurse who coordinates patient care at my hospital’s breast center is named Mary. Mary is a cheerful, middle-aged woman who has seen a lot of cancer patients. She sets up all my appointments with an air of benevolent efficiency, writing out date cards and reminders, giving me phone numbers to call. She seems like someone who is used to helping lost people find their way. The very first time I meet Mary, I am standing anxiously in front of her desk, wondering how I got here and what will happen to me. Mary senses this, leans forward, and says, quietly, as if she’s letting me in on a secret: “You know what? You’re going to be fine. I promise. It will be a terrible year of your life, and then it will all be over.”

I hold onto these words tightly. I carry them with me like a lucky penny in my pocket. Mary knows, and I will trust her.

By the spring, it’s all over. I’m left with a three-inch-long diagonal scar, and an indentation the size of a melon ball that I’m told will “fluff up” over time. Under my right arm there is another diagonal scar, dark purple, where lymph nodes have been removed. I send enormous baskets of fruit to my doctors, and to the radiation oncology team. I thank them for saving my life.

*****

My daughter is almost 10 now, and at this point I’m fairly confident that she’ll remember me for the rest of her life, for good or ill, no matter what happens. The scars have faded; the melon-ball dent has filled in a bit. My bras don’t fit quite right, but that seems a small price to pay.

I try not to think about the other costs of this disease, but they exist at the periphery, their tendrils snaking down into the rest of my life. I try not to think about how we stopped trying for a second child because I was told that pregnancy would put me at risk of recurrence, and it seemed more important for my young daughter to have a mother than a sibling. I try not to think about the constant surveillance when I’m squeezed into an MRI machine with my breasts fitted into a metal cage, an IV sticking out of my arm. I try not to think about the mammograms, about that long wait in that same waiting room every year until the results are in. I try not to think about the times that possible complications of long-term tamoxifen use have sent me to the hospital for pelvic ultrasounds and uterine biopsies.

I feel very fortunate that I’ve been alive and able to experience my daughter’s childhood. It could just as easily have gone differently, as it does, tragically, for so many women.  I think of friends whose lives this disease has claimed in the years since I beat it back, and I feel sorrow, mixed with gratitude. And I try to get on with my life.

A few months ago, my most recent MRI showed a small area of abnormality in my other breast. My oncologist feels it’s most likely benign. I trust her, as I trusted Mary, as I trusted the crystal ball of the Oncotype score. You just have to keep moving the pieces around the board, making the best decisions you can, using whatever information you can get, trying to win the game and get to the end of your life before the cancer does.

I have a follow-up test soon. I’ll keep you posted.