Blood Matters

by Masha Gessen

  Women who undergo surgical menopause can have far more extreme symptoms than women who go through “the change” naturally, sometime in their fifties. This is probably because the levels of hormones, estrogen and progesterone, drop suddenly rather than diminishing over time, and also because the hormones disappear completely—while the ovaries of postmenopausal women continue to produce a little bit of estrogen for years. Being the only one among your peers to go through the process certainly doesn’t help.

  “Over time it gets better,” said Bauer-Wu. Did she mean it actually gets better? No. “I can’t say that women are living without symptoms. But it gets better to live with.”

  So, what if it were you? I asked. Or someone you love?

  Bauer-Wu struck me as the kind of person who has opinions but doesn’t believe it is often socially appropriate to share them. This is also what made her answer, if she was going to give me one, especially valuable.

  “If it was myself or a family member,” she said, “I’d help them look at the statistics. But they are just statistics. It all depends on where women are in their lives.” I’d heard such platitudes dozens of times, and my heart sank at enduring more polite nonanswers. But then she said something that surprised me. She said maybe some women should not get oophorectomies, that maybe they should get regular surveillance instead. She was the first medical professional I had met who suggested that surveillance for ovarian cancer might be meaningful and effective. She said she knew women who had ovarian cancer that was caught early and cured.

  A few hours after the interview I received an e-mail message from her: “I’ve continued to think about this issue since we met this morning. I still think that close surveillance (i.e. CA-125 with vaginal and abdominal ultrasound every 3 months) is a reasonable option for some women, especially those concerned about quality of life issues after surgery. Of note, I doubt most insurance companies will pay for such monitoring.” Setting aside the implication that there are women who are not concerned about quality-of-life issues, as well as yet another indication of the absurdity of insurance practices, this was the brightest ray of hope I had seen yet.

  Bauer-Wu suggested I contact Dr. Ross Berkowitz, professor of gynecology at the Harvard Medical School and director of gynecology and gynecologic oncology at Brigham and Women’s Hospital. Berkowitz had a deep, lulling voice and a professor’s measured pace of speech, which made note-taking easy. I interviewed him over the phone, because he was a very busy man, and also partly because I hated going to Brigham and Women’s, where my mother had her mastectomy and where her downward spiral began.

  Berkowitz studies early detection of ovarian cancer. The symptoms of ovarian cancer are infuriatingly vague: an enlarged abdomen, diarrhea, and/or constipation. The available screening tools are ultrasounds and the blood test for CA-125, which stands for “cancer antigen 125,” and which is often elevated in women with ovarian cancer. The problem is, by the time the level of CA-125 becomes clearly abnormal, the cancer has usually spread. Ultrasound is generally even less sensitive. Berkowitz’s lab had been working on finding additional markers, substances for which tests could be run alongside the test for CA-125. They had identified six potential candidates. I expected Berkowitz to say that, with effective surveillance methods apparently coming soon, women might not be foolish to keep their ovaries. In fact, I assumed he would advocate surveillance over surgery.

  Berkowitz said that women at risk for ovarian cancer should get oophorectomies. Even women who are not yet forty? I asked. (To the extent that the statistics can be trusted, the risk of ovarian cancer shows up around forty or later, depending on the specific BRCA mutation.) “For a thirty-seven-year-old woman with the mutation,” said Berkowitz, unwittingly describing me, “as long as they’ve completed their childbearing, it’s not an unreasonable option. It’s not so rare for these cancers to be diagnosed before the age of forty.”

  But surveillance might be available so soon, I countered, and the costs of surgery were so great. “You are talking about a disease that’s 80 percent lethal,” he responded. “And yes, hot flashes are unpleasant. And one needs to prevent osteoporosis, and you need to treat vaginal dryness in various ways—but I think death is worse.”

  American medicine takes essentially an instrumental view of the body: the body as a car. These things need regular checkups. Doctors are mechanics whose primary goal is to ensure that the functions are performed properly. The primary function of the body is reproduction—hence the ease with which a woman’s reproductive organs are discarded once the function has been performed.

  I heard this attitude distinctly in Berkowitz’s comment, and I described my feelings in Slate magazine, thereby infuriating several other doctors, who wrote me letters about the ungrateful nature of patients like me and the disrespectful ways of journalists like me. All of which made me think that I had stumbled upon an important disjunction between the medical profession and the lives it is called upon to heal.

  One particularly vivid example of this thinking is the treatment of intersex newborns—babies who, as a result of any one of a dozen genetic conditions, are born with ambiguous-appearing genitals. Historically, doctors have “assigned” these babies to the male sex if they could grow up to impregnate a woman and to the female sex if they could not. Surgery was—and often still is, despite patient advocates’ growing objections—performed very early in life to bring the child’s appearance in line with his or her sex assignment.

  The most famous case of this kind of surgery occurred in a baby who was born not intersex but a normal male—or, as the medical literature puts it, “an XY individual.” David Reimer’s penis was burned off during a botched circumcision when he was eight months old. Doctors ultimately convinced his parents to have the boy’s testicles removed and a vagina constructed and to raise him as a female. One of their key arguments was that, as a man, he would never be able to have normal heterosexual relations, marry, or have children.

  David Reimer’s transformation into a female was a disaster. When he finally learned the truth, as a teenager, he refashioned himself as a male, had a mastectomy (breasts had grown because he was taking estrogen) and a phalloplasty—a penis was surgically created for him. He eventually married. At the age of thirty-eight he committed suicide.

  David Reimer’s story, discussed extensively in the late 1990s, surely contributed to a fine-tuning of the mainstream thinking on intersexuality: In the day of the genome, genetics is edging reproductive anatomy out as a deciding factor in gender assignment for intersex babies. In other words, being “an XY individual” may now hold more sway than being an individual with a penis. What remains unchanged, though, is the surgical habit: Even as advocates for intersex babies—most of whom were born intersex—argue that surgery should be delayed until the person can make up his or her own mind about it, doctors tend to want to use their scalpels to complete “sex assignment.”

  This, of course, is nothing new. For thousands of years people have been going under the knife in the name of normalization and disease prevention. Consider a list of surgical procedures that became routine before they were abandoned because they proved either useless or harmful: bloodletting, routine tonsillectomy, routine circumcision (the United States remains the only country where most male babies are circumcised whether or not their parents’ religion requires this), repeated cesarean delivery, internal-thoracic-artery ligation (a once-touted method for improving blood flow in angina patients), gastric freezing (a procedure used in about fifteen thousand duodenal ulcer patients in the 1960s, before a placebo-control study exposed it as ineffective and dangerous), prophylactic porta-caval shunting (major surgery that relieves blood pressure in the liver). The effectiveness of surgery is much harder to evaluate than the effectiveness of medication: A placebo-controlled study would necessarily involve sham surgeries, which are dangerous and generally considered ethically unacceptable. So irreversible surgical procedures become a part of standard medical practice faster and mo
re easily than do chemicals.

  It came to make sense to me that the frontier of genetic medicine was, in fact, surgical. The simple and decisive nature of surgery is seductive. It is a one-shot deal. Being able mentally to reduce one’s own body to a collection of parts creates a powerful sense of control. Cancer, particularly hereditary cancer, makes this feeling of control especially desirable. Cancer is one’s own cells gone awry. Cutting out the potentially offending organ before it has a chance to betray you shows the body who is boss. The greater one’s fear of cancer, the greater the temptation to cut.

  Perhaps the only force that can moderate this response is another fear. In the year before my genetic diagnosis I had battled postpartum depression. The sense that my mind was a traitorous, unreliable partner had only recently left me. My fear of experiencing that again was, I was starting to think, greater even than the fear of cancer. After my own fashion, I was coming around to Susan Bauer-Wu’s “whole-body perspective.”

  ***

  I spent the period from the mid-1980s to the early ’90s writing about AIDS. It was rare luck as a beginning reporter to be able to sink my teeth into one of the big stories of the century. I learned everything important back then. I learned that how authoritative someone sounds is a measure only of how firmly this person believes in the information, not of how accurate the information is. I remember interviewing people who said there was no way the Food and Drug Administration’s drug-approval process could be shorter than ten years (at this writing it is down to 25 percent of that, in some cases), people who said there would never be an AIDS vaccine (there still is not, but there likely will be), people who said HIV does not cause AIDS (it does), and people who said there would be no effective therapies for generations (there already are).

  Now I relearned the fine art of listening to medicalspeak as I went from expert to expert. I spent a couple of hours with an oncologist going over the fine points of cancers that mutation carriers might develop and how they differ from cancers that occur spontaneously. It seemed that breast cancer in mutation carriers might or might not be more aggressive and harder to treat than in noncarriers. Ultimate survival rates were not significantly different. On the other hand, mutation carriers seemed to have a significantly higher risk of recurrence of breast cancer. The story with ovarian cancer was different: It seemed it might be more treatable in mutation carriers than in noncarriers. But all of these statistics quickly started to run together: Compared to my overall risk, these were tiny, insignificant amendments.

  As I shifted the piles of data around in my head, I found myself thinking about my days as an AIDS reporter more and more often. I remembered 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 thirty-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 remembered the zest with which doctors and patients rushed to administer antiretroviral drug “cocktails” to anyone who had tested positive for HIV, and the slow disappointment that set in as the drugs’ side effects, ranging from the aesthetically unappealing to the potentially life-threatening, emerged—until generally accepted practice switched to starting treatment later in the progression of the disease. I also remembered the great controversies—still raging in some impoverished parts of the world—about whether and why anyone should get tested if patients were helpless to do anything about the results.

  Most important, though, I remembered the peculiar sense of belonging to a community that lived by a separate set of values. Its heroes were long-term survivors, whose special attitude, knowledge, and medical decisions were believed to account for their better-than-average fortune. Its currency was information: People educated themselves in the language of medicine and traded information through newsletters and endless conversations (this was before the Internet). Its members paid their dues by subjecting themselves to experimental treatments ranging from taking unapproved medication to drinking their own urine to traveling to Mexico to have their blood put through a heating machine. The guerrilla researchers would report back, passing around their notes and parading their bodies—apparently intact, which was itself a triumph—and, often enough, a following would immediately form.

  This was something else I recognized: a peculiar sort of crowd mentality. In a sense, my time as an AIDS reporter now seemed like it had been a rehearsal for my current medical trip. Then I had been an engaged observer: I lost many friends to AIDS, but I was never even at risk myself. Now I found myself becoming a member of another community that was inventing new rules for living under the threat of death. There turned out to be an organization called FORCE (Facing Our Risk of Cancer Empowered), which united women with various BRCA mutations. On its online forum, women traded scientific information, surgery experiences, and insurance-handling tips, vented, and sometimes cried in the virtual comfort of a community populated by clever and sometimes hokey usernames.

  The virtual identities belonged, for the most part, to well-educated urban women, who tried to be as open-minded and accepting of one another as one can be with strangers. But, as in any closed community, conventional wisdoms took shape and took hold. By the standards of FORCE, it was right to choose to have both of the surgeries—the mastectomies and the oophorectomies. It was even right to have a particular sort of reconstruction—and at a particular medical center at that. The women of FORCE may or may not have been a representative cross-section of American BRCA mutation carriers: The single existing study of the behavior of BRCA mutation carriers showed that none of them opted for a preventive mastectomy within two years following the test, while a whopping 46 percent (and 78 percent of those older than forty) had an oophorectomy.

  The FORCE women lived by the laws of progress: They made their decisions in accordance with the latest medical evidence (even when it was not complete or when it ran counter to previous knowledge), and they applied the latest medical techniques to themselves. This was where I learned about the cutting-edge breast-reconstruction techniques, which involved using a woman’s own fat tissue, from the belly, the back, or the buttocks, to build new breasts from natural tissue that would be connected to a woman’s own blood vessels.

  Sue Friedman, the founder of FORCE, was the sort of woman who believed in controlling her fate and her health. She was a conscientious exerciser, a vegetarian, and generally a bit of a health freak, and at thirty-three, in 1996, she was diagnosed with breast cancer. The cancer was particularly intractable: She had a lumpectomy, which left her doctors uncertain they had gotten all the cancer, then a mastectomy a month later, but it came back in another eight months. Around that time she read about the BRCA mutations in a Jewish newspaper. No one had told her about the possibility that her cancer was genetically determined—possibly because she had no obvious history of breast cancer in her family. She was tested, turned out to be positive for the same mutation I have, started to look for information on her condition—and found next to nothing. So she started a Web site, which turned into a nonprofit organization, which turned into a full-time job, which helped spin a community, which I now found myself warily joining.

  She was a natural leader for this kind of community. A veterinarian, she had no difficulty with the medical lingo, and she inspired confidence in the newcomers, all of whom she took the time to welcome personally, albeit virtually. She set an obvious example of proactive mutation management: She had all the surgeries. When I called her for an interview, she was happy to share her personal story but reluctant to talk about her experience following the oophorectomy. The effects of her own surgery had been disastrous. Things were all right at first, but a couple of years after the operation she found herself unable to get up off the couch. She termed it “severe life-altering fatigue.” Antidepressants barely took the edge off it. The m
edication she took for her severe joint pain also did little to help her. It took her and her doctors a year to figure out she needed hormone-replacement therapy—a risky choice for a breast cancer survivor, because it may contribute to the risk of a recurrence, but then in Sue’s case it was no choice at all. Within two weeks of starting the hormones, she was off the antidepressants and the pain medication, and off the couch as well. “Mine is not the most common experience,” she cautioned me after telling the story. But neither was it very uncommon.

  What Sue Friedman was doing was what Daniel Kahneman, the psychologist who won the Nobel Prize in economics, termed “framing.” There is nothing wrong with it—indeed, it is inevitable that our options are always framed one way or another. A classic example of framing, used in universities all over the world, goes something like this.

  Your city is facing an outbreak of a deadly exotic disease, which is expected to kill six thousand people. You must choose between two different programs proposed for combating the epidemic. If Program A is adopted, two thousand people will be saved. If Program B is adopted, there is a one-third probability that all the six thousand people will be saved and a two-thirds probability that no one will be saved.

  People generally choose Program A, which offers the comforting certainty that at least some lives will be saved. But the problem can be phrased differently.

  If Program A is adopted, four thousand people will die. If Program B is adopted, there is a one-third probability that no one will die and a two-thirds probability that six thousand people will die.

  Now people will tend to choose Program B.

  More than twenty years ago, Kahneman’s collaborator Amos Tversky conducted a study of the framing effect on medical decision making. He asked groups of patients, doctors, and graduate students to choose between surgery and radiation as a treatment for lung cancer and found that the results varied significantly depending on how the decision was framed: It was important whether the treatments were named, whether information was presented in terms of life expectancy rather than cumulative probability, and whether it was framed in terms of the probability of living rather than the probability of dying.