Have I mentioned the dread with which the idea of breast cancer fills me? Have I mentioned that since I tested positive, I have made mental note of every moment that occurs in the course of every day when it is assumed that I will live a few more decades? Like when we talk about the kids going to college, the kids getting married, my writing many more books, or just getting old. It is amazing, actually, how many references to the uncertain, distant future we make—and now, every time we do, I think of my mutation.
I haven't mentioned this yet because I think it's self-evident. I think there is nothing that scares us more than cancer—and nothing that scares women more than breast cancer. Studies consistently show that American women overestimate their risk of getting breast cancer—and of dying of it—by a factor of about 20. It seems even women with the genetic mutation overestimate their risk. Being told that you have as much as an 87 percent lifetime risk of getting breast cancer sounds an awful lot like, "You will get breast cancer." Part of it is the way you are told—and told, and told, and told. Everyone with whom I have discussed it as a patient—the genetic counselor, the head of the testing program, my own doctor—have cocked their heads to the side and said, "I'm sorry" in that soft voice and with that long silent ellipsis that indicate the utmost extent of sympathy. I think it would be better if they said something like, "Congratulations! You can be the first woman in your family who actually does something about her risk of breast and ovarian cancer! You are in control." I probably would be just as annoyed with them, because the news would still be bad and their manner would still feel unnatural, but at least I wouldn't feel buried alive. Instead, my own doctor, when I protested that I don't actually have cancer, corrected me rather pedantically: "You don't have any detectable cancer."
So, I've been trying to wrap my mind around cancer. Cancer is my own cells growing out of control and getting in the way of my body's normal functioning. This may sound obvious, but I feel like it's important, as I consider how much I fear cancer—compared with how much I fear, say, heart disease, high blood pressure, and osteoporosis—to remember that cancer is not a foreign thing but my own body, or, rather, a part of my own body, turning against itself. This idea seems important because the doctors are suggesting I beat it to the punch by, in effect attacking my body before it attacks itself.
So, how extreme is that, really? I ask Wendy Chen, an oncologist and epidemiologist at Harvard and the Dana Farber Cancer Institute, which is where I was tested. Dr. Chen usually deals with women whose cancer has already been detected; some of them, after being diagnosed, have found out they have one of the BRCA mutations. These women, like all women, tend to overestimate their risk—in their case, the risk of a recurrence.
Having a personal or family history of breast cancer, she says, only exacerbates the tendency to focus on cancer and disregard one's risk of other diseases—"even if they smoke and are overweight." (Though a study of women who come in for BRCA testing shows that the majority of women who seek the test lead healthier lives than most people—then again, that might tell us nothing, because these women are also generally better-educated and simply better off than most people.)
So, tell me about this cancer of mine that is not, as of yet, detectable, I say. Is it true that it is likely to be more aggressive and difficult to treat than cancers in women who don't have one of the known mutations? That's what they say, agrees Dr. Chen, but it's actually difficult to confirm: a study would have to compare women with and without mutations, whose cancer was diagnosed at the same stage at the same age, but in the women who are mutation carriers tend to get cancer at a younger age. One study seemed to indicate that BRCA1 mutation carriers are more likely to develop medullary cancer, a less-common type of breast cancer that, if I understand this correctly, looks worse than it is: it can grow large but is fairly unlikely to spread beyond the breast. At the same time, mutation carriers are definitely more likely to see a recurrence of their cancer in the other breast. In the big scheme, the differences seem insignificant. "In the very long term there is no real impact on survival rates," says Dr. Chen. Not that mutation carriers live as long on average as other people: they don't. Chen is comparing mutation carriers to other women who have been diagnosed with breast cancer. She says that "the risk of eventual recurrence and death is the same" for many different kinds of breast cancer. And in the really long term we all die. The point is to put it off.
Oddly, ovarian cancer in these mutation carriers may actually be easier to treat: It seems to respond better to chemotherapy, says Dr. Chen—perhaps because the mutation itself prevents the repair of DNA destroyed by chemotherapy. That's the good news. The bad news, which is not news at all, is that ovarian cancer is almost never caught at a stage when treatment can be effective: Usually by the time it is diagnosed, the cancer has spread beyond the ovaries. This is one reason doctors suggest that women with the mutations get a preventive oophorectomy. The other reason is that two studies conducted at Sloan-Kettering showed that an oophorectomy could cut breast-cancer risk in half.
But, Dr. Chen points out, the studies were not very large: One looked at 170 women and another at 259. More important, they mixed together women with BRCA1 and BRCA2 mutation, who actually tend to get different breast cancers. Women with the BRCA2 mutation usually develop breast cancer that feeds on estrogen; women with BRCA1, which is "my" mutation, are more likely to develop breast cancer that has no estrogen receptors (unlike most of the rest of a woman's body). The oophorectomy probably works to prevent breast cancer by cutting off the estrogen supply—which may not make a difference in my case. In other words, the one-size-fits-all recommendation I received—that, to cut my chances of getting breast cancer I undergo an oophorectomy as soon as possible—was probably misdirected.
Unless, says Dr. Chen, there is another, unknown mechanism by which an oophorectomy would reduce the risk of breast cancer. A lot of cancer treatment has historically worked this way: Doctors threw everything they could at it and kept using what seemed to work even if they didn't understand exactly why. But cutting off my ovaries sooner than I have to just because that might mitigate against breast cancer seems absurd to me (especially since there is the more-obvious but, for doctors at least, virtually unmentionable option of cutting off the breasts instead). After talking to Dr. Chen, I think I should consider an oophorectomy after the age of 40, when my risk of developing ovarian cancer appears. That's only three years away—a blink in epidemiological time—but that's a long time for me to continue not to worry about heart disease, osteoporosis, hot flashes, memory loss, depression, sleep deprivation, and weight gain. It's also time enough for me to change my mind about not having another baby and have one.