When the writer becomes the patient
A health journalist who has written about changing guidelines for breast cancer screenings finds herself caught between statistics and personal decisions
One afternoon last fall, I was pacing a high school parking lot in Wilbraham, straining to see my son running in his first cross-country meet, while absently listening to Muzak on my cellphone. My doctor had put me on hold as he looked for my pathology report on his fax machine.
Three weeks earlier, my annual mammogram had turned up some calcifications. Apparently, they can either be benign calcium deposits or signs of something worse. When I went in for a biopsy, the radiologist showed me the X-rays, and I could just make out a few tiny white dots scattered amid my veiny breast tissue. “We get a lot of false alarms,” a nurse assured me shortly before a thin needle was inserted into my left breast to take out the dubious cells and send them out for analysis.
I wasn’t actually very worried. I’d been overreacting to health scares for so long, I had gotten used to most news being better than I feared. Plus, I exercise regularly, eat well, and don’t smoke.
“Well, Karen . . . ” My doctor’s voice broke into the Muzak just as my son was running into view. “The report says ductal carcinoma in situ.”
I waited for the part where he added, “So everything’s fine. Don’t forget to get your thyroid levels checked and I’ll see you next year.”
But instead, he repeated what was starting to sound a lot like a real diagnosis. “It is cancer. But the good news is, we caught it early.”
Good news, apparently, is relative. As I pressed the phone closer to my ear, blocking out the cheering track parents, my doctor tried to end on a positive note: “It’s a good thing we didn’t follow those recent mammogram recommendations.”
He was referring to the controversial 2009 US Preventive Services Task Force report on mammography. The medical advisory group had looked at national statistics to weigh the benefits of routine breast screening against the harms. They calculated how often mammograms prevent or delay breast cancer deaths and how often they lead to false positives or unnecessary treatment. With the data in hand, they suggested the average woman wait until she is 50 to start getting routine mammograms, and then to get them every two years. (More recent studies have come to the same conclusion.)
But there was such an uproar by cancer specialists and policy makers that most doctors have stuck to the guidelines that had been in place for years: start mammograms at 40 and get them yearly. That’s what my insurance company was paying for, and that’s what I did.
As a journalist who covers public health trends, I could see why that might be considered overutilization of the health care system.
But as a 46-year-old mother who just got a cancer diagnosis from a routine mammogram, I shared my doctor’s reaction: “Phew.”
Were both reactions justified? Perhaps. The problem is, the right recommendation for millions of people might be wrong for any given individual — a dilemma that became clear as soon as that individual was me. The task force recognized this issue, noting that patients should discuss their own situation with their doctors and could opt for earlier screening. But how do you make personal health decisions based on a public-health bell curve when you have no idea which end of the curve you’re on?
My precise diagnosis — known by its acronym DCIS — only made things more confusing. DCIS is a noninvasive, “stage 0” cancer that lives inside the milk ducts of the breast. It accounts for about 60,000 of the country’s 200,000 breast cancer diagnoses annually. One reason a growing number of researchers discourage early mammograms is that many more women will be diagnosed with DCIS and, they argue, get needless, invasive treatment.
In an estimated 70-80 percent of DCIS cases, the cancer cells will never leave the ducts, never metastasize into the rest of your body, and never kill you. Had I waited until I was 50 to get my first mammogram, it’s likely doctors would have found the very same DCIS — still sitting demurely inside my ducts — and we could have dealt with it then.
But it’s also possible I would have been among the smaller percentage for whom DCIS cells become more aggressive, nudge their way out of the ducts and become invasive. Since there’s currently no clinical test to tell who is in which group, most oncologists assume you’re at the highest risk and treat accordingly.
That approach jibes well with my own worldview — namely, that there’s no such thing as overtreatment when the person being treated is you. That’s what I was thinking when I went in for my first surgical consult, with my husband, Sean, and my friend Miriam along for support. During the time it took me to change into my front-opening hospital gown, I had decided to make it easy on all of us — “Feel free to just lop the whole thing off.”
The empathetic surgeon gently closed my gown, and made it clear — with a patience that told me I was not the first to make the offer — that sacrificing a body part would not be necessary.
In some cases, he said, where malignant cells are spread throughout the breast, a mastectomy is the best option. But even though I had a high grade of DCIS — the “angriest” level, he explained — the cells were clumped in a small area. So he recommended a lumpectomy. (Yes, he acknowledged, the chance of a recurrence is slightly higher when you keep the breast, but the chance of dying from it remains the same.) A second surgeon I consulted agreed.
An even lower-impact option, which neither surgeon mentioned, was to do nothing but watch and wait, to see if anything changed over the next few mammograms. I imagine the doctors took one look at me, gnawing at my nails, clutching a long list of typed questions, and recognized someone who cannot tolerate that degree of uncertainty. I don’t play the stock market; I never miss a teeth cleaning; and I was not about to leave my longevity up to finger crossing.
I wanted those angry cells out.
The lumpectomy was an outpatient procedure and left only a subtle scar behind. But when the surgeon called to tell me he got the whole tumor out, he said there is always a chance some rogue cancer cells remained in my breast and would need to be destroyed.
So I met with a radiation oncologist, a warm and vivacious woman whom I knew socially. “I know you like to have all the information,” she said, fanning out a stack of medical studies on a conference table, with key statistics highlighted in yellow. In women with DCIS, she pointed out, the 12-year likelihood of recurrence — either DCIS again or invasive cancer — went from 31 percent without radiation down to about 16 percent with radiation.
That was the good news. The bad news was that radiation carries its own, albeit low, risks, including damage to the heart, damage to the lungs, or a secondary cancer caused by radiation. That’s not including run-of-the-mill side effects, such as skin blisters and fatigue.
“I think you are an excellent candidate for radiation,” the doctor concluded, and at first, I took that as a compliment. Then I realized being an excellent candidate meant the risks of doing nothing outweighed the risks of radiation.
“What if I’m in the group who would do fine with no more treatment, and here I am irradiating my body for no reason?” I wondered aloud to Miriam after the appointment. “Or what if I get invasive cancer anyway?”
“And what if you get both your arms torn off by a pit bull?” Apparently, Miriam had just read a newspaper article where that actually happened. But bizarre animal attacks aside, she made a good point: You have to make decisions based on the most likely outcome, and the worries you can live with.
Within a week, as I was lying on a cold radiation table with my arms held awkwardly above my head, a high-energy X-ray machine pointed at my breast, I wondered if this was the right call. The 33 doses I got over the next seven weeks were not unbearable, but I may never know if they were necessary. There is no control group for a sample size of one.
Thankfully I was not a candidate for chemotherapy, but I still had one more decision to make — whether to start a five-year course of hormone-therapy called Tamoxifen. Studies show that about 9 percent of women with my grade of DCIS, after lumpectomy and radiation, still get invasive cancer within five years. That number goes down to about 5 percent among those who take Tamoxifen. Was that statistical boost worth the small but scary risks of Tamoxifen, including stroke, blood clots, and uterine cancer? Not to mention the menopausal-like hot flashes and night sweats that some women report?
My oncologist couldn’t say. Statistics are helpful in developing protocol for hundreds or thousands of patients, she admitted, but they couldn’t make me any personal promises. In the end, I talked to a friend at our Thanksgiving table who took Tamoxifen with no problems. That conversation tipped the balance for me . . . though only just.
Should I have gotten the mammogram that started all this hand wringing? Medical researchers are still trying to answer that question. A study in the December 2013 issue of JAMA Internal Medicine found that a woman in her 40s, after a decade of annual mammograms, is between 7 and 100 times more likely to be needlessly treated than to be spared a breast cancer death. But that’s a big range.
I’ve met women with my diagnosis who chose more extensive treatment than I did, and some who chose less. We are all pulling from the same data, and presumably we want the same outcome — a long and comfortable life, with little regret. But we vary greatly in our tolerance for risk-taking, our trust of technology, our appetite for medical intervention.
There are efforts to develop sophisticated decision-making tools — using genetic biomarkers and other tests — to help women decide, case by case, whether to get screened or treated. In the meantime, I don’t envy the charge of the US Preventive Services Task Force, which is updating its mammogram guidelines. It’s one thing to calculate the odds; it’s quite another to recommend a betting strategy that works for everyone.
It’s indoor track season now, and between my son’s events, as I nurse my irradiated skin and push through the fatigue, I’ve had a lot of time on the bleachers to think. I finally realized that I can only do so much to minimize risk; either I get cancer again or I don’t, no matter what the numbers say. Nor can I eliminate worry; that’s who I am, and what I do. But by over-analyzing each statistic, driving my doctors crazy, and accepting my own psychological comfort level, I feel I’ve done all I can to minimize regret.