My Brief Trip to Cancerland
I knew, as soon as I heard the radiologist’s voice on the phone, that the news wasn’t good. “Is this an O.K. time to talk?” she asked. If everything was fine, she would have said that. Instead, she was saying, “I’m so sorry, but your biopsy came back positive for cancer.”
Still in my pajamas, I scribbled down notes. “Will probably need lumpectomy and radiology. Find surgeon. Call this number.” Of course, through the 10-minute conversation, the only word that really registered was “cancer.”
What happened was this: A few months ago, I went for a mammogram. The doctors saw spots they didn’t like. I wasn’t concerned. Once you hit your late 40s, it’s practically a rite of passage. You will see your mother’s face when you look in the mirror. You will require a young child to fix your phone or explain a meme. And you, or a friend, or a sister, will get a call about her mammogram. Over the years, I’ve driven friends to get ultrasounds, and taken them home after needle biopsies. Everything always turned out fine, which reflects the statistics: Most women who have an abnormality on their mammograms will be O.K.
This time, not me. I went for additional imaging. I had a core needle biopsy.
Then I got the call.
I hung up the phone and went into panic mode. I worked my contacts, calling or emailing every friend I knew who had been unlucky enough to go through this, thinking that I was lucky to have people to call, a sister-in-law who works for Stand Up to Cancer and knows every doctor in the world, and good insurance. I locked in on a surgeon and began leaving borderline-frantic messages on her voice mail.
When the surgeon’s office called back, I was in the car, on my way to Vermont with my family for Presidents’ Day weekend. I’d thought about canceling, then decided that going away and staying busy was better than sitting home obsessing. The soonest appointment available was weeks away, an announcement that kicked off a second round of frantic calling and emailing. I had cancer, and they expected me to just hang out for weeks with this thing in my body?
We got to Vermont. My husband was sick in bed. My mom, who was with us, had been knocked out by a bad reaction to a tetanus shot. For a while, I was the only able-bodied adult, getting ski boots on and off, shepherding the kids to their lessons. At one point, I slipped on a patch of ice. My feet flew out from under me and I landed on my back, cracking my head on the ice. I lay in the snow, looking up at the sky, calling, “Isn’t there someone who doesn’t have cancer who can help?” There was not.
I made it through the weekend. I skied with the kids. I practiced the piano. I tried to act like everything was fine even, while every minute I was awake my mind was churning, repeating the words “breast cancer” on an endless loop.
Back at home, I went to the hospital to collect a CD with my images on it. “Good luck, hon,” the receptionist said. That’s how you know you’re in cancerland — instead of “Have a nice day” you get “Good luck.” You Google local oncologists. You teach your iPhone’s talk-to-text how to spell “lumpectomy” (mine kept hearing “lump back to me”).
And then I got some good news.
My surgeon read my films, examined me, sat down in her office with me and my husband and told us that the thing that I have, L.C.I.S., lobular carcinoma in situ, is not cancer, exactly. It’s more like a warning sign for cancer.
Then why did the radiologist tell me I had cancer? I asked. I had taken notes — I was sure that’s what I’d heard. The surgeon didn’t have an answer, but she did have a plan. Because my not-exactly-cancer — pleomorphic L.C.I.S. — had features that made it behave more aggressively than just plain, old L.C.I.S., my surgeon wanted to examine the tissue, make sure that the margins were clear and that those cells weren’t hiding worse news. It should come out.
Ten days later, at 7 a.m., I went to the hospital. In the radiology department, two lovely nurses, a technician and a doctor worked together to place a wire into my breast that would guide my surgeon to the mass. I stood on my tiptoes, leaning forward with my back arched and my breast stuffed into the mammogram chamber, with the doctor crouched underneath me and the technician watching a screen, calling out quadrants like my breast was a Battleship board. It was almost as much fun as the pre-surgery M.R.I., which involved lying face down with my breasts dangling, udder-like, through cutouts in the table and a bar digging into my sternum.
Then I sat in a waiting room, a warmed blanket over my legs, while at least six people asked my name and my date of birth and what I was there for. Lumpectomy, I said, over and over. Left breast. Lumpectomy. Left breast. A technician used a Sharpie to write “YES” on the appropriate side, and I snapped a picture for my “Drag Race”-loving daughter, captioned “Serving fierce pre-surgery realness.”
My surgeon swung by with her own Sharpie, and the anesthesiologist put in an IV. I was wheeled into the chilly operating room and shifted onto the narrow table. An hour later, I woke up with the bottom half of my breast stiff with bandages and the top looking like a graffitied wall.
Two days later, my surgeon called. The margins were clear. Everything was fine. I could breathe again.
When I imagined telling people about my experience, I envisioned its conclusion: a rousing chorus of “Go get your mammograms!” Even if you’re busy! Even if you don’t have a family history! Even if you nursed your kids!
I know the stories about women who, like me, had abnormal mammograms, but whose biopsies or M.R.I.s revealed advanced cancers that were successfully treated. Early detection saves lives, I’d always heard, and it seemed like a reasonable mantra.
Except now, some researchers are rethinking this practice. There are organizations saying that the word “carcinoma” shouldn’t be part of lobular carcinoma in situ — and that women should be told they have a growth or a neoplasm, an elevated risk or a precancerous condition instead. (Though pleomorphic L.C.I.S., which I had, is considered more serious.) Some organizations even contend that women under 50 with no family history of the disease shouldn’t be getting mammograms at all.
Dr. H. Gilbert Welch, the author of the book “Overdiagnosed” has spent 20 years arguing that looking for trouble with increasingly advanced tests and machinery means it’s more likely we’ll find it and that aggressive treatment isn’t necessarily the best way of handling early cancers.
“Are fewer women dying from breast cancer? The answer is a dramatic yes,” Dr. Welch told me. Breast cancer death rates are down by nearly 40 percent since 1989. But he credits that improvement to better treatment of advanced cancers, not to screening.
Dr. Welch pointed to men who receive a low-risk prostate cancer diagnosis. In many cases, they are encouraged to watch and wait instead of jumping immediately to surgery.
Someday, he thinks, doctors and patients could talk about managing cancer, the way people manage heart disease and diabetes and AIDS.
When I told him that I couldn’t imagine just “managing” something with a name that includes the word cancer, or telling my friends I’d decided to forgo mammograms, he was sympathetic. “It’s a paradigm shift,” he said. “But maybe the best approach to health isn’t constantly looking for things to be wrong.”
Dr. Steven Katz, a professor of medicine and health management and policy at the University of Michigan, studies cancer treatment communication and decision-making. He understands that people who hear the C-word want to take immediate action. “Our intuitive and emotional reactions are wired for millennia and millennia,” he said. “When there’s a fire in the cave, you run. ”
Making good decisions begin with what you hear from your doctor in the first place.
“The way we frame illness and the treatment options is the most important factor driving what happens next,” he said. “And the cancer label is particularly profound.”
“Did you get a second opinion?” he asked me.
When I said that I hadn’t, he wasn’t surprised. According to a study by Dr. Katz and other researchers, more than 90 percent of patients newly diagnosed with early-stage breast cancer do not seek a second opinion. Like me, they’re operating on a toxic cocktail of panic and what Dr. Katz calls “anticipated regret” — the idea that you want to throw every possible solution at a problem so that, at the end of the day, you can think, “I tried everything.” Doctors, he said, need more training in addressing patients’ intuitions. Patients need to slow down and try to keep their emotions in check.
“There is time for just about any decision you make,” he said.
Four weeks after my lumpectomy, the purple-and-yellow bruises that made my breast look like a summer thunderstorm have faded and the stitches have dissolved. All that’s left are the occasional twinge, a U-shaped scar that looks like a smile, and questions. When I look back, I feel like Dorothy, scooped up by a hurricane, blown into a strange new land and just as quickly dumped back in Kansas.
It wasn’t until after my panic and my surgery that I began to read about doctors who think we’re testing too much and treating too aggressively, and to think about what the psychologists Daniel Kahneman and Amos Tversky called the anchoring effect, the way the first number you hear affects the decisions you make. When you’re told that a set of knives is valued at $59.99, $19.99 sounds like a bargain. Maybe when the first word you hear is “cancer,” surgery, as soon as possible, feels like the only possible move.
I know myself well enough to believe that there was no way I was going to live with something, whether it was cancer or pre-cancer or cancer’s second cousin once removed, hanging out in my chest. I don’t regret my decision. But I have questions about the way I made it.
Humans crave certainty. We want to know that we married the right person, voted for the right candidate, made the right choice when our health was at risk. When we turn to science, we want Magic 8-Ball-level absolutes: Without a doubt. You may rely on it. It is decidedly so.
Maybe doctors will be treating early signs of cancer differently in 10 years, or not even calling them cancers at all. Maybe I’d never go in for that initial mammogram. Or maybe nothing’s going to change, and I did exactly the right thing. I’ll never know, which leaves me with those maddening Magic 8-Ball answers that nobody wants. Reply hazy. Ask again later. Better not to tell you now.
Jennifer Weiner (@jenniferweiner) is the author, most recently, of the memoir “Hungry Heart” and a contributing opinion writer.
This article originally appeared in The New York Times.
Get more resources and information by selecting a specific cancer type.