As I mentioned, I spent the period from the mid-1980s to the early ‘90s writing about AIDS. I’ve always thought it was rare luck to have gotten my start in journalism reporting one of the biggest stories of the century. The lessons of AIDS have shaped my reporting on everything, from wars to the intricacies of Kremlin intrigue. The central lesson was: How authoritative someone sounds is a measure only of how firmly this person believes in what he is saying, not of how accurate the information is. I remember interviewing people who said there was no way the FDA drug-approval process could be shorter than 10 years (it’s now down to 25 percent of that, in some cases), people who said there would never be an AIDS vaccine (there still isn’t, but there likely will be), people who said HIV doesn’t cause AIDS (it does), and people who said there would be no effective therapies for generations (there already are). Hell, as recently as a couple of years ago I have interviewed doctors in Russia who told me there still is no treatment.
I remember other things, too. I remember two men with AIDS coming to fisticuffs in the office of my magazine when one accused the other of not being an “empowered person with AIDS” because he was not getting a then-state-of-the-art treatment called aerosolized pentamidine. I remember a robust, asymptomatic 30-year-old HIV-positive man dropping dead from a heart attack after procuring some Compound Q, a Chinese concoction that was briefly hyped as the wonder drug. I remember also that just six years ago doctors were advocating unequivocally that antiretroviral “cocktails” be given to people as soon as they test positive for HIV, and that over the years, as more and more reports of the side effects of these drugs, ranging from the aesthetically unappealing to the potentially life-threatening, emerged, doctors have leaned increasingly toward delaying treatment. And, of course, I remember the great controversies—still raging in some parts of the world—about whether and why anyone should get tested when he is helpless to do anything about the results.
Like all parallels, the comparisons between HIV and BRCA mutation tests are imperfect. But there are many similarities. Among them is the pervasive lack of information. Just as PWAs had to tell their physicians about information they’d gotten through AIDS Treatment News (a biweekly newsletter published out of the editor’s home), or through a treatment-activist group, so do women with BRCA mutations have to tell their doctors what they have found through www.facingourrisk.org, an online community of women with BRCA mutations. It’s not easy, being an empowered patient: I keep putting off calling my doctor and explaining to her that to have the best chance of detecting ovarian cancer early, I want CA-125 tests every two to three months and that each time I want to have blood drawn a couple of times in one week, to compensate for the wide variations in levels of this substance. When I do tell her this, I will be passing on the latest thinking, which just might prove completely erroneous in a couple of years. But if I don’t do it, I will be angry with myself and might even be taken to task by other BRCA-mutant women for not being sufficiently empowered. I have already been told by several of them that I am wrong not to opt for a preventive oophorectomy as soon as possible. I’ve held back from telling them they are crazy to have chosen the operation, with its irreversible effects, when effective early detection of ovarian cancer may be just a couple of years away. Of course, in such an argument both sides are just as right and just as wrong as the men who, in the late 1980s, broke into two warring factions over the issue of whether to take the highly toxic early anti-HIV drug AZT. I am certain that there are people alive today who lived long enough to see more-effective therapies precisely because they took AZT when that was the only drug available. I am just as certain, though, that there were people whose death was hastened by the drug’s nasty side effects, and who might otherwise have lived long enough for the new anti-retrovirals.
But saying that prevention is an entirely personal decision feels utterly unsatisfying. The other day I interviewed a 22-year-old who has been beating down the doors of surgeons in her town in Michigan asking them for a preventive mastectomy and oophorectomy. Two refused out of hand, citing her age, and one told her to come back in a year and tell him whether she still felt she wanted the surgery. I know all the arguments I would use if I were in her shoes: that her body is hers alone; that if she had come asking for a breast enlargement, she wouldn’t have been sent away; in fact, that even if she had come asking for a sex-change operation, she probably would have been able to find someone to remove her breasts and ovaries and chase that with shots of testosterone. At the same time, I find I want to tell her to wait, to enjoy her sex life while she has her ovaries and breasts, to have children and nurse them, and to rejoice in being so young that by the time her risks really kick in, there may be a cure. But the fact is, she is a 22-year-old who saw her grandmother die after struggling with both ovarian and breast cancers for 19 years, who saw her mother live through two debilitating courses of treatment at the ages of 34 and 42, and who is convinced she doesn’t want to have children with a 50/50 risk of passing the mutation on to them. The things I want to tell her about the joys of sex and motherhood are things she won’t miss if she never experiences them—and she may not be able to enjoy them while living with the constant anxiety about cancer.
Having seen what cancer can do to someone you love seems to be the biggest factor in determining what course women will choose after testing positive—even if they know their decisions are not necessarily rational. Nancy Prouser, a 52-year-old public-health specialist who runs a program in Portland, Ore., that teaches clinicians to do breast exams, decided to undergo a preventive mastectomy because she had watched her mother die of breast cancer at 58. The fact is, however, that Nancy inherited her BRCA2 mutation not from her mother but from her father, who was diagnosed with breast cancer at 76 and is still alive 11 years later (about 2 percent of breast cancers are diagnosed in men, and it now seems that half or more of these may be caused by one of the mutations). Nancy is a walking consciousness-raising program on genetic mutations: She lectures, she counsels women who are sent to her by genetic counselors, and she has, she says, “gone into the bathroom at Starbucks to let a woman see and touch my reconstruction” (she has saline implants and reconstructed nipples). She is a good advertisement for preventive surgery: At her age, if she hadn’t had both the mastectomy and the oophorectomy, she’d likely have cancer. But she is also frank about the huge blow her body image has sustained and her complete loss of libido.
But women like Nancy Prouser, who are willing publicly to reach out to other women, are rare. Most women I interviewed did not want their names used—mostly because they fear insurance discrimination, against themselves as well as their blood relatives. Some women, according to Nancy Prouser, so fear insurance discrimination that they get the preventive surgery solely on the basis of family history, without ever getting tested. For most women, the only place where they get to talk to other “previvors”—women who have a mutation but have never had cancer—is on the Internet, or among their own family.
A less-than-harmonious family can be torn apart by the discovery of a mutation, with accusations, resentments and meddling running rampant. A good family can be a woman’s best source of support. A 28-year-old social worker from Wisconsin told me she knew exactly what she was going to do if she tested positive because her mother’s three first cousins had all already had bilateral preventive mastectomies with immediate DIEP flaps in New Orleans—so, naturally, she is going to do the same thing. She tested positive in March; her surgery is now scheduled for October. Like most women I’ve talked to—like me—she expected to be told she was positive, but the information still came as a shock. “It’s really hard to explain,” she says. “I guess I kind of replayed all of the shit my mom went through in my head. And my kids’ faces went through my head. And even though I knew I was high-risk before this it was for real now.”
That pretty well describes my state of mind right after I found out I had the mutation. I think there are two existential milestones in a person’s life. The first comes when one loses one’s mother. It is the moment when one becomes truly an adult, at once free of the maternal pull and vulnerable to everything that mothers protect us from. The second comes when one is handed conclusive proof that one is not invincible. For women with one of the BRCA mutations, both of these milestones tend to come earlier than for most contemporary Americans. I lost my mother at 25, and at 37 learned that I am likely to die early of cancer. It’s having gone through both of these experiences that makes it so difficult to make the necessary decisions: I know that whatever I decide, it will be irreversible.
But I have to make the decisions. So, here they are. I plan to get a bilateral preventive mastectomy with immediate DIEP flap reconstruction as soon as my daughter is weaned, possibly as early as this coming autumn. I am not going to get a preventive oophorectomy, at least until I am 40, and will aim to avoid getting one at all, which means staying up-to-date on early-detection research and forcing my physician to do so as well. This means that for the rest of my life I will bear the physical marks of my mutation and will have to stay obsessively on top of medical research and my own health. This is the sort of thing that eventually happens to most people—but for me, like so many other things, it has to happen earlier.