Not everyone goes for cosmetic deceptions, and the question of wigs versus baldness, reconstruction versus undisguised scar, defines one of the few real disagreements in breast cancer culture. On the more avant-garde, upper-middle-class side, Mamm magazine—in which literary critic Eve Kosofsky Sedgwick served as a columnist—tends to favor the “natural” look. Here, mastectomy scars can be “sexy” and baldness something to celebrate. A cover story featured women who “looked upon their baldness not just as a loss, but also as an opportunity: to indulge their playful sides . . . to come in contact, in new ways, with their truest selves.” One woman decorated her scalp with temporary tattoos of peace signs, panthers, and frogs; another expressed herself with a shocking purple wig; a third reported that unadorned baldness made her feel “sensual, powerful, able to recreate myself with every new day.” But no hard feelings toward those who choose to hide their condition under wigs or scarves; it’s just a matter, Mamm tells us, of “different aesthetics.” Some go for pink ribbons; others will prefer the Ralph Lauren Pink Pony breast cancer motif. But everyone agrees that breast cancer is a chance for creative self-transformation—a make over opportunity, in fact.
In the seamless world of breast cancer culture, where one Web site links to another—from personal narratives and grassroots endeavors to the glitzy level of corporate sponsors and celebrity spokespeople—cheerfulness is required, dissent a kind of treason. Within this tightly knit world, attitudes are subtly adjusted, doubters gently brought back to the fold. In The First Year of the Rest of Your Life, for example, each personal narrative is followed by a study question or tip designed to counter the slightest hint of negativity—and they are very slight hints indeed, since the collection includes no harridans, whiners, or feminist militants:
Have you given yourself permission to acknowledge you have some anxiety or “blues” and to ask for help for your emotional well-being? . . .
Is there an area in your life of unresolved internal conflict? Is there an area where you think you might want to do some “healthy mourning”? . . .
Try keeping a list of the things you find “good about today.” 7
As an experiment, I posted a statement on the [http://Komen.org] Komen.org message board, under the subject line “Angry,” briefly listing my complaints about the debilitating effects of chemotherapy, recalcitrant insurance companies, environmental carcinogens, and, most daringly, “sappy pink ribbons.” I received a few words of encouragement in my fight with the insurance company, which had taken the position that my biopsy was a kind of optional indulgence, but mostly a chorus of rebukes. “Suzy” wrote to tell me, “I really dislike saying you have a bad attitude towards all of this, but you do, and it’s not going to help you in the least.” “Mary” was a bit more tolerant, writing, “Barb, at this time in your life, it’s so important to put all your energies toward a peaceful, if not happy, existence. Cancer is a rotten thing to have happen and there are no answers for any of us as to why. But to live your life, whether you have one more year or 51, in anger and bitterness is such a waste. . . . I hope you can find some peace. You deserve it. We all do. God bless you and keep you in His loving care. Your sister, Mary.”
“Kitty,” however, thought I’d gone around the bend: “You need to run, not walk, to some counseling. . . . Please, get yourself some help and I ask everyone on this site to pray for you so you can enjoy life to the fullest.” The only person who offered me any reinforcement was “Gerri,” who had been through all the treatments and now found herself in terminal condition, with only a few months of life remaining: “I am also angry. All the money that is raised, all the smiling faces of survivors who make it sound like it is o.k. to have breast cancer. IT IS NOT O.K.!” But Gerri’s message, like the others on the message board, was posted under the inadvertently mocking heading “What does it mean to be a breast cancer survivor?”
The “Scientific” Argument for Cheer
There was, I learned, an urgent medical reason to embrace cancer with a smile: a “positive attitude” is supposedly essential to recovery. During the months when I was undergoing chemotherapy, I encountered this assertion over and over—on Web sites, in books, from oncology nurses and fellow sufferers. Eight years later, it remains almost axiomatic, within the breast cancer culture, that survival hinges on “attitude.” One study found 60 percent of women who had been treated for the disease attributing their continued survival to a “positive attitude.” 8 In articles and on their Web sites, individuals routinely take pride in this supposedly lifesaving mental state. “The key is all about having a positive attitude, which I’ve tried to have since the beginning,” a woman named Sherry Young says in an article entitled “Positive Attitude Helped Woman Beat Cancer.” 9
“Experts” of various sorts offer a plausible-sounding explanation for the salubrious properties of cheerfulness. A recent e-zine article entitled “Breast Cancer Prevention Tips”—and the notion of breast cancer “prevention” should itself set off alarms, since there is no known means of prevention—for example, advises that:
A simple positive and optimistic attitude has been shown to reduce the risk of cancer. This will sound amazing to many people; however, it will suffice to explain that several medical studies have demonstrated the link between a positive attitude and an improved immune system. Laughter and humor has [sic] been shown to enhance the body’s immunity and prevents against cancer and other diseases. You must have heard the slogan “happy people don’t fall sick.” 10
No wonder my “angry” post was greeted with so much dismay on the Komen site: my respondents no doubt believed that a positive attitude boosts the immune system, empowering it to battle cancer more effectively.
You’ve probably read that assertion so often, in one form or another, that it glides by without a moment’s thought about what the immune system is, how it might be affected by emotions, and what, if anything, it could do to fight cancer. The business of the immune system is to defend the body against foreign intruders, such as microbes, and it does so with a huge onslaught of cells and whole cascades of different molecular weapons. The complexity, and diversity, of the mobilization is overwhelming: Whole tribes and subtribes of cells assemble at the site of infection, each with its own form of weaponry, resembling one of the ramshackle armies in the movie The Chronicles of Narnia. Some of these warrior cells toss a bucket of toxins at the invader and then move on; others are there to nourish their comrades with chemical spritzers. The body’s lead warriors, the macrophages, close in on their prey, envelop it in their own “flesh,” and digest it. As it happens, macrophages were the topic of my Ph.D. thesis; they are large, mobile, amoebalike creatures capable of living for months or years. When the battle is over, they pass on information about the intruder to other cells, which will produce antibodies to speed up the body’s defenses in the next encounter. They will also eat not only the vanquished intruders but their own dead comrades-in-arms.
For all its dizzying complexity—which has kept other graduate students toiling away “at the bench” for decades—the immune system is hardly foolproof. Some invaders, like the tuberculosis bacillus, outwit it by penetrating the body’s tissue cells and setting up shop inside them, where the bacilli cannot be detected by immune cells. Most diabolically, the HIV virus selectively attacks certain immune cells, rendering the body almost defenseless. And sometimes the immune system perversely turns against the body’s own tissues, causing such “autoimmune” diseases as lupus and rheumatoid arthritis and possibly some forms of heart disease. It may not be perfect, this seemingly anarchic system of cellular defense, but it is what has evolved so far out of a multimillion-year arms race with our microbial enemies.
The link between the immune system, cancer, and the emotions was cobbled together somewhat imaginatively in the 1970s. It had been known for some time that extreme stress could debilitate certain aspects of the immune system. Torture a lab animal long enough, as the famous stress investigator Hans Selye did in the
1930s, and it becomes less healthy and resistant to disease. It was apparently a short leap, for many, to the conclusion that positive feelings might be the opposite of stress—capable of boosting the immune system and providing the key to health, whether the threat is a microbe or a tumor.
One of the early best-selling assertions of this notion was Getting Well Again, by O. Carl Simonton, an oncologist; Stephanie Matthews-Simonton, identified in the book as a “motivational counselor”; and psychologist James L. Creighton. So confident were they of the immune system’s ability to defeat cancer that they believed “a cancer does not require just the presence of abnormal cells, it also requires a suppression of the body’s normal defenses.” 11 What could suppress them? Stress. While the Simontons urged cancer patients to obediently comply with the prescribed treatments, they suggested that a kind of attitude adjustment was equally important. Stress had to be overcome, positive beliefs and mental imagery acquired.
The Simontons’ book was followed in 1986 by surgeon Bernie Siegel’s even more exuberant Love, Medicine, and Miracles, offering the view that “a vigorous immune system can overcome cancer if it is not interfered with, and emotional growth toward greater self-acceptance and fulfillment helps keep the immune system strong.” 12 Hence cancer was indeed a blessing, since it could force the victim into adopting a more positive and loving view of the world.
But where were the studies showing the healing effect of a positive attitude? Could they be duplicated? One of the skeptics, Stanford psychiatrist David Spiegel, told me he set out in 1989 to refute the popular dogma that attitude could overcome cancer. “I was so sick of hearing Bernie Siegel saying that you got cancer because you needed it,” he told me in an interview. But to his surprise, Spiegel’s study showed that breast cancer patients in support groups—who presumably were in a better frame of mind than those facing the disease on their own—lived longer than those in the control group. Spiegel promptly interrupted the study, deciding that no one should be deprived of the benefits provided by a support group. The dogma was affirmed and remained so at the time I was diagnosed.
You can see its appeal. First, the idea of a link between subjective feelings and the disease gave the breast cancer patient something to do. Instead of waiting passively for the treatments to kick in, she had her own work to do—on herself. She had to monitor her moods and mobilize psychic energy for the war at the cellular level. In the Simontons’ scheme, she was to devote part of each day to drawing cartoonish sketches of battles among buglike cells. If the cancer cells were not depicted as “very weak [and] confused” and the body’s immune cells were not portrayed as “strong and aggressive,” the patient could be courting death, and had more work to do. 13 At the same time, the dogma created expanded opportunities in the cancer research and treatment industry: not only surgeons and oncologists were needed but behavioral scientists, therapists, motivational counselors, and people willing to write exhortatory self-help books.
The dogma, however, did not survive further research. In the nineties, studies began to roll in refuting Spiegel’s 1989 work on the curative value of support groups. The amazing survival rates of women in Spiegel’s first study turned out to be a fluke. Then, in the May 2007 issue of Psychological Bulletin, James Coyne and two coauthors published the results of a systematic review of all the literature on the supposed effects of psychotherapy on cancer. The idea was that psychotherapy, like a support group, should help the patient improve her mood and decrease her level of stress. But Coyne and his coauthors found the existing literature full of “endemic problems.” 14 In fact, there seemed to be no positive effect of therapy at all. A few months later, a team led by David Spiegel himself reported in the journal Cancer that support groups conferred no survival advantage after all, effectively contradicting his earlier finding. Psychotherapy and support groups might improve one’s mood, but they did nothing to overcome cancer. “If cancer patients want psychotherapy or to be in a support group, they should be given the opportunity to do so,” Coyne said in a summary of his research. “There can be lots of emotional and social benefits. But they should not seek such experiences solely on the expectation that they are extending their lives.” 15
When I asked Coyne in early 2009 whether there is a continuing scientific bias in favor of a link between emotions and cancer survival, he said:
To borrow a term used to describe the buildup to the Iraq war, I would say there’s a kind of “incestuous amplification.” It’s very exciting—the idea that the mind can affect the body—and it’s a way for the behavioral scientists to ride the train. There’s a lot at stake here in grants for cancer-related research, and the behavioral scientists are clinging to it. What else do they have to contribute [to the fight against cancer]? Research on how to get people to use sunscreen? That’s not sexy.
He feels that the bias is especially strong in the United States, where skeptics tend to be marginalized. “It’s much easier for me to get speaking gigs in Europe,” he told me.
What about the heroic battles between immune cells and cancer cells that patients are encouraged to visualize? In 1970, the famed Australian medical researcher McFarlane Burnet had proposed that the immune system is engaged in constant “surveillance” for cancer cells, which, supposedly, it would destroy upon detection. Presumably, the immune system was engaged in busily destroying cancer cells—until the day came when it was too exhausted (for example, by stress) to eliminate the renegades. There was at least one a priori problem with this hypothesis: unlike microbes, cancer cells are not “foreign”; they are ordinary tissue cells that have mutated and are not necessarily recognizable as enemy cells. As a recent editorial in the Journal of Clinical Oncology put it: “What we must first remember is that the immune system is designed to detect foreign invaders, and avoid our own cells. With few exceptions, the immune system does not appear to recognize cancers within an individual as foreign, because they are actually part of the self.” 16
More to the point, there is no consistent evidence that the immune system fights cancers, with the exception of those cancers caused by viruses, which may be more truly “foreign.” People whose immune systems have been depleted by HIV or animals rendered immunodeficient are not especially susceptible to cancer, as the “immune surveillance” theory would predict. Nor would it make much sense to treat cancer with chemotherapy, which suppresses the immune system, if the latter were truly crucial to fighting the disease. Furthermore, no one has found a way to cure cancer by boosting the immune system with chemical or biological agents. Yes, immune cells such as macrophages can often be found clustering at tumor sites, but not always to do anything useful.
To my intense shock and dismay as a former cellular immunologist, recent research shows that macrophages may even go over to the other side. Instead of killing the cancer cells, they start releasing growth factors and performing other tasks that actually encourage tumor growth. Mice can be bred to be highly susceptible to breast cancer, but their incipient tumors do not become malignant without the assistance of macrophages arriving at the site. 17 A 2007 article in Scientific American concluded that at best “the immune system functions as a double-edged sword. . . . Sometimes it promotes cancer; other times it hinders disease.” 18 Two years later, researchers discovered that another type of immune cell, lymphocytes, also promote the spread of breast cancer. 19 All those visualizations of courageous immune cells battling cancer cells missed the real drama—the seductions, the whispered deals, the betrayals.
Continuing in an anthropomorphic vein, there’s an interesting parallel between macrophages and cancer cells: compared with the body’s other cells, both are fiercely autonomous. Ordinary, “good” cells slavishly subject themselves to the demands of the dictatorship of the body: cardiac cells ceaselessly contract to keep the heart beating; intestinal lining cells selflessly pass on nutrients that they might have enjoyed eating themselves. But the cancer cells rip up their orders and start reproducing like independent organisms, whil
e the macrophages are by nature free-ranging adventurers, perhaps the body’s equivalent of mercenaries. If nothing else, the existence of both is a reminder that the body is in some ways more like a loose, unstable federation of cells than the disciplined, well-integrated unit of our imaginings.
And, from an evolutionary perspective, why should the body possess a means of combating cancer, such as a form of “natural healing” that would kick in if only we get past our fears and negative thoughts? Cancer tends to strike older people who have passed the age of reproduction and hence are of little or no evolutionary significance. Our immune system evolved to fight bacteria and viruses and does a reasonably good job of saving the young from diseases like measles, whooping cough, and the flu. If you live long enough to get cancer, chances are you will have already accomplished your biological mission and produced a few children of your own.
It could be argued that positive thinking can’t hurt, that it might even be a blessing to the sorely afflicted. Who would begrudge the optimism of a dying person who clings to the hope of a last-minute remission? Or of a bald and nauseated chemotherapy patient who imagines that the cancer experience will end up giving her a more fulfilling life? Unable to actually help cure the disease, psychologists looked for ways to increase such positive feelings about cancer, which they termed “benefit finding.” 20 Scales of benefit finding have been devised and dozens of articles published on the therapeutic interventions that help produce it. If you can’t count on recovering, you should at least come to see your cancer as a positive experience, and this notion has been extended to other forms of cancer too. For example, prostate cancer researcher Stephen Strum has written: “You may not believe this, but prostate cancer is an opportunity. . . . [It] is a path, a model, a paradigm, of how you can interact to help yourself, and another. By doing so, you evolve to a much higher level of humanity.” 21
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