Malignancy in an Imperfect World
By Walter Cummins
When the Stanford anthropologist S. Lochlain Jain received a diagnosis of breast cancer in her mid thirties, she did what many educated cancer victims do: she wrote a book, Malignant: How Cancer Becomes Us (University of California Press, 2013). In Jain’s case, her work was written after medical intervention resulted in apparent remission, when she could consider the experience in retrospect and examine it in the broader context of cancer in America. Unlike others who produce autobiographical reports of their cancer, she uses what happened to her in the prime of life as a wedge to reveal failings of the pharmaceutical industry and of the medical and legal systems.
Her revelations have won the praise of many, if the opening pages of blurbs are any indication. Malignant is called “a beautifully poetic fusion of the personal and the political,” its scholarship “incredible.” One commenter says, “I have never read a book that was so spot-on when it comes to understanding the inadequacy of our current plan of attack in the war on cancer.”
From the assemblage of information Jain provides, I learned a great deal about the responses to cancer in American society and was convinced by much of her economic and political analysis. Her personal cancer story also allowed me to compare her encounter with the disease with my own, noting how much our diagnoses and treatments differed, along with the attitudes of those who treated us. But primarily I realized how much we disagree on matters of human capability and culpability.
Jain’s Cancer and Mine
My cancer manifested at a time I, twice Jain’s age, was closing in on my inevitable end. Other than controlled high blood pressure and a back that occasionally went out of joint, I’d gotten that far without any serious health issues (and not even many sick days). When my urologist called late one night to report that a urine analysis revealed the likelihood of a malignancy in my bladder, it came as a complete surprise because I had been asymptomatic. No lump, no blood, no pains. While the news did keep me awake with dark thoughts, in the clear light of day I couldn’t deny the inevitability of some dire diagnosis at my age. I was lucky to have gotten this far unscathed, merely taking a couple of hypertension pills every morning and bearing no surgical scars. I had no one to blame. I’d enjoyed decades of a good marriage, seen my children grow with another generation, involved myself in a career of teaching and writing, and relished the pleasures of frequent travel. And though I was still very active, anything I did next would be more of the same. I’d achieved all that I could hope to. The bottom line: I hadn’t been cheated by cancer and had no reason or right to complain.
A number of peers my own age have recently learned that they, too, had cancer. None are happy about it, but for the most part they share my reaction: not quite fatalism, more like resignation. We’re at a stage where we’re going to die of something, and cancer is one of those things. That doesn’t mean submission, retreating into passivity in the face of the inevitable. We undergo chemo and radiation therapies. We submit to surgeries. Cancer is a nasty bugger, and we don’t want to let it win. Not yet. Not for a while. Still, at best, remission—which I appear to enjoy—will only be a temporary reprieve.
Jain, on the other hand, was in the midst of a career when malignancy struck. She was raising two very young daughters and in the early days of a new relationship. She had kids to nurture, a love to develop, teaching and research to accomplish, books to write. Her unexpected breast cancer threatened all that, potentially robbing her of decades to relish her joys and fulfill her potential. As a cancer patient, she bonded with other victims her age, meeting with them in support groups. These people lamented the unhappy likelihood of children and partners left behind, careers abandoned, all the unfinished business of what we assume to be normal living. A good number of Jain’s fellow sufferers died. This appears to be one source of her drive to hold someone or something responsible, to assert blame for something that had gone terribly wrong.
If my cancer diagnosis had come when I, like Jain, was in my late thirties, I’m sure I would have been more upset, finding it unfair and unnatural, demanding accountability as I railed against the universe. That is how I understand the undertone of resentment running through most of her book.
A Port in the Chest
Consider our very different reactions to the Port-a-Cath, a device implanted into the upper chest just below the shoulder to provide an entry for drug infusions, replacing the need to pierce a fresh vein for every treatment. Jain chose the port over the alternative of a “PICC line catheter” that would have been inserted in a vein to avoid frequent piercing and then taped to her arm when not being used. She reports that when she requested the port, “The nurse looked at me as if I were crazy.” According to Jain, the doctor implanting it “gouged away for a long, long time” and finally told her “it was embedded as if in concrete.”
For me the procedure turned out to be minor surgery requiring no more than a local anesthetic. While it took place with minimal sensation, I kept thinking, so begins my cancer treatment. I was curious about it all—what would come next? My wife drove me home, and that was that. The port produces a lump under the skin but no lingering pain. It contains some metal, so I received a card to show TSA agents at airport security—though I’ve never set off an alarm. Every now and then I feel the port when taking a shower, now just part of the new me, ready for a potential repeat of chemotherapy.
Jain, on the other hand, eager to be rid of the device, had her port removed immediately after finishing her chemo treatment. It’s as if by denying the port Jain wanted to deny her cancer; the port’s existence served to remind her that her body harbored an unnatural presence, a reminder that the cancer was also an unnatural invader. But while cancer may seem foreign enemy, it is an enemy from within, the ongoing process of cell regeneration gone berserk, violating the normal restraints with wild replication.
Jain’s desire to be rid of the port, that reminder of her mortality, is certainly understandable, especially for a person eager for decades of survival. She wanted it consigned to a container of medical waste. For me the port functions as a momento mori. At my age, one becomes used to reminders of mortality, and if the wish to endure does not subside, the sense that death is something that can be forgotten, something unnatural, declines.
Bad People or Faulty Systems
At the beginning, Jain states a more benign purpose than the resentment I infer:
I want to usher cancer and its identities out of the closet and into a space not of comfort, or righteous anger, but of mourning, a space where the material humanity of suffering and death informs communicative and collective action.
But beneath it all I sense a dominant judgment: society mishandles cancer and its victims through obfuscation, mismanagement, indifference, and even corruption. Jain states, for example, “Part of Americans’ dismal life expectancy results from the broad lack of access to healthcare as well as documented discrimination against the usual suspects: African Americans, women, younger people, and queers.” The seeming entitlement of health is “often cast aside as an externality. No one feels this more baldly or sees it more starkly than those who have slipped off the bandwagon at the peak of the party onto the cold, hard cement.” This rhetoric reveals more righteous anger than mourning.
Not that it shouldn’t. One example of the dismissal she refers to is a recent study of survival rates for breast cancer by the Sinai Urban Health Institute in Chicago and the Avon Foundation for Women. Mortality trends in 41 large
American cities reveal that on average African American women with the disease are more likely to die than white women. Steve Whitman, the study’s senior author, attributes this great disparity to racism. “It’s undeniable that this is systemic racism,” he told the New York Times. “I don’t mean that a bad person is at the door personally keeping women out, but the system is arranged in such a way that it’s allowing white women access to the important gains we’ve made since 1990 in terms of breast health, and black women have not been able to gain access to these advances.”
Like Whitman, I tend to focus on the inadequacies of the system, while Jain tends to see bad people who distort the system. For much of Malignant, Jain exposes greedy industries and inept, oblivious, or avaricious medical and legal systems. Her scholarly tools equip her to dig up facts, resulting in a different perspective from the great majority who write about their cancer experience. Even those who are angry attack the fact of the affliction rather than the institutional and economic context. But Jain doesn’t rage against cancer itself. Her powerful emotions are externalized, projected onto those organizations and individuals that spew carcinogens, fail patients, and profit from the disease, even hinting that some of that profit comes from deliberate calculation and manipulation.
Jain possesses the knowledge, the research abilities, the analytical skills, and the data to support many of her accusations. Pharmaceutical companies should contain their toxic waste and make drugs more accessible and affordable. Many physicians and others in the medical community should treat patients with more compassion and understanding. The legal system should provide recompense for victims of medical failures.
Cancer and the Pharmaceutical Industry
Jain targets the nexus between the chemical and pharmaceutical industries. One produces the carcinogenic substances that cause cancers and the other makes huge profits from drugs that treat those cancers. In some cases, they are two arms of the same corporation. She reports that Imperial Chemical Industries (ICI), specializing in both agrochemicals and pharmaceuticals, came out with Tamoxifen, a breast cancer drug, in 1978, and joined the American Cancer Society to initiate National Breast Cancer Awareness Month, promoting the now-debated mammography to detect tumors. But in 1990, ICI was accused of dumping carcinogens into the harbors at Long Beach and Los Angeles. In 1993, ICI demerged its pharmaceuticals businesses and its agrochemicals and specialties businesses to form Zeneca, and in 1999, it merged with Astra AB to form AstraZeneca. Zeneca previously had developed a herbicide called Acetochlor. According to the U.S. Environmental Protection Agency, Acetochlor is a probable carcinogen. To top it off, AstraZeneca has been sued and penalized for inflating the price of Tamoxifen illegally.
Jain suggests that cancer cause and treatment may be seen as a linking of market opportunities. Noting that companies like General Electric and DuPont make millions selling screening machines and films while pouring toxic
waste into the air and water, Jain writes, “In such a climate the focus on awareness and screening does not bring us any closer to understanding the ways that key aspects of the economy involve both causing and treating cancer.”
But what role does greed play? How cynical are the AstraZenecas of the world? How do they rationalize the much-reported evidence that their greed for profits causes human suffering? Doesn’t this bother them? Are they evil?
Some argue that although certain drugs—antibiotics, vaccines, chemotherapies—have greatly increased human lifespans and reduced suffering, the pharmaceutical industry in recent years has become more and more sleazy. For some people it shares the same disrepute as tobacco. Consider the billions several companies have been fined for off-label marketing or faulty products. Some, including people I know with connections to the industry, have speculated that the fines are now considered a cost of doing business, a small price compared to the much greater profits recorded even after the fines have been paid. Companies also suppress negative data on drugs in trial or already approved. They spend millions marketing new expensive drugs that are no more effective than cheap generics. Through direct-to-consumer advertising they create false “needs” for their products. But do they deliberately cause or increase cancer to create markets? I may be naïve in finding that unlikely, though the pharmaceutical companies certainly profit from cancer’s existence. Would they be pleased if a cure, e.g., a vaccine, eliminated the need for their drugs and obliterated a market? That’s debatable.
Jain also attacks the government for inadequate testing of new chemical compounds. Only a fraction of the thousands in existence have been scrutinized. To Jain this is because of a laissez-faire approach that favors business over health. We live amidst a sea of dangerous chemicals—in the food we eat, in the cleansers we use, in the clothes we wear, in the carpets we walk on. With so little regulation, how can people not get cancer?
While in certain situations it can be concluded that a particular environmental condition or substance lead to the development of a certain set of cancers —e.g., radiation leakage and thyroid cancer, asbestos and lung cancer, tobacco and lung cancer—a cause-effect connection is often guesswork, especially because a person may get a particular cancer many decades after being exposed to the potentially cancer-causing agent. For example, my own cancer popped up in the bladder. The main cause of such a growth has been identified as smoking. I never smoked; my wife stopped before we met; no one in our house smokes. My first wife was a heavy smoker; but we parted decades before my diagnosis. Was it her addiction? Or could it have been a chemical used in the production of my underwear? Would regulation have spared me?
Cancer and the Medical Community
Jain also has a few harsh things to say about the medical community, including the first breast cancer specialist she saw. That woman, identified only by her “Farrah Fawcett hair and Nordic looks,” refused to biopsy the lump detected by Jain’s primary care doctor, relenting only after pressure from Jain’s mother, herself a physician. The procedure was a needle biopsy performed by two medical students, done only to pacify Jain’s mother. It proved to be an inadequate and inaccurate procedure: although the students concluded the lump was benign, it turned out to be malignant. Jain later learned that “Dr. Nordic,” a renowned cancer researcher, didn’t believe in screening, asserting that biopsies “are painful and can spread cancer.”
That physician’s behavior may have been extreme, if not arrogant, and Jain’s research uncovered how others in the medical system had also misdiagnosed cancers. But the studies of misdiagnosis tracked down by Jain turned out to be underestimates because many examples are not reported. She does cite a study that suggests medical errors may account for 250,000 deaths a year in the U.S.
Jain did consider a malpractice suit against Dr. Nordic, but research into the legal disposition of such cases dissuaded her. With skepticism, she discusses Atul Gawande’s “acclaimed book” Complications: A Surgeon’s Notes on an Imperfect Science. She is unsympathetic to Gawande’s regretful conclusion that surgery is complex and risky and that doctors are imperfect human beings. While she agrees perfection is impossible, she argues Gawande is wrong in absolving from penalties the individual surgeons who make non-egregious mistakes that fall short of malpractice but still result in harm. They are responsible only to the profession, not to the patient. But the victims may face years of medical expenses as a result of these errors. Who should compensate them and bear the costs? Both the legal and medical systems fail to address the issue adequately. Here again, I concur that Jain raises a legitimate issue. But are inadequate laws evidence of bad people?
My own diagnosis and treatment couldn’t have been more different in the attention and thorough care I received from doctors. My urological surgeon met with my wife and me for an hour to discuss my diagnosis and for another hour after my course of chemotherapy to discuss my surgery. He answered all questions, explained all possibilities. But I have no evidence to claim that my experience was more representative than Jain’s. It could be that I was fortunate to be in the hands of exceptional and compassionate physicians, and that mine were rare in the medical establishment. I’d like to believe they represent the majority.
Cancer and Longevity
Jain’s legitimate critique of American industry raises a paradox. Despite all the carcinogens that envelop us, people are still living longer, accumulating the additional years that make cancer a greater probability. There’s a tradeoff involved. Central heating in winter and air conditioning in summer, electronic wonders with toxic components, and cars that spew emissions increase the quality of life for growing numbers in the world. In one mood we are concerned about the environmental costs and in another mood we appreciate the comforts.
Clearly, the state of our environment and lifestyles produces health costs—obesity and its links to diabetes and heart issues, air quality and asthma, etc. But Jain may be overstating the case in emphasizing the environmental causes of a cancer epidemic, at least in the United States. A much great culprit is our growing longevity, the likely reason I and my age mates got cancer.
As people grow older their probability of getting cancer—from whatever source— increases significantly. According to the 2009-2010 report of the President’s Cancer Panel, the number of cancer cases will double between 2010 and 2050, from 1.3 million to 3 million, with the percentage of victims under the age of 45 (Jain’s cohort) holding steady. The real growth will occur among those 65 and older (my cohort). The aged are an increasing percentage of the U.S population and are thus expected to get an increasing variety of cancers.
According to the introduction to a report for the Oncology Nursing Society by Diana G. Cope, “Cancer and the Aging Population”:
A signiﬁcant increase in the number of older adults in the United States is projected in the coming decades. Older adults, deﬁned as people aged 65 years and older, possess greater cancer incidence and mortality rates compared to younger people. Approximately 60% of all cancers occur in the older adult population, resulting in an incidence rate that is 10 to 11 times higher than in the younger population.
People between 40 and 59 have an 8 to 9 percent risk of getting cancer, with the risk growing to 20 to 30 percent for those older than 60. Older adults also have a higher mortality rate, with approximately 70 percent of cancer deaths occurring among people over 65.
But, along with cancer for people my age, there’s Alzheimer’s disease. A study reported in the February 2013 online issue of Neurology projects that “[T]he total number of people [in the U.S.] with Alzheimer’s dementia in 2050 is projected to be 13.8 million, up from 4.7 million in 2010. About 7 million of those with the disease would be age 85 or older in 2050.” As the number of elderly grows, so do the chances for dementia. According to the calculations, old people are twice as likely to get Alzheimer’s as cancer. Given the option, I’d choose cancer.
Cancer and the Developing World
Jain’s analysis probably has greater relevance for the developing world, where the number of cancer cases is growing for all age groups. In the U.S. affluence makes possible early detection and therapies that prolong life for those who suffer many forms of cancer, albeit those with access to the health care system. We have weapons to counteract the consequences of our environment and lifestyles. Not so for large numbers of people on the planet.
A study by the International Agency for Research on Cancer (IARC), part of the World Health Organization (WHO), reveals that in poor countries more people die of cancer than of AIDS, malaria, and tuberculosis combined. For years infections have resulted in liver and cervical cancer. But with enough economic development to permit more drinking, smoking, and consumption of fatty foods, the numbers of breast, colorectal, and lung cancer malignancies have grown. People consume things that aren’t good for them, and those in charge make the wrong decisions, often because they don’t know any better. While such cancers are often managed in affluent countries, the poor lack facilities, awareness, and medications. Trained oncologists are rare in many parts of the world. Some languages don’t even have a word for cancer. People in pain don’t know the cause. Significant reductions in the spread of cancer can be achieved through certain vaccines, alternate medical procedures, reallocation of funds for research and drugs, and smoking cessation programs. In short, with information and policy changes, the cancer problem can be addressed, bringing the experience of cancer in poor countries to the level of that in the affluent. The main difference will be lower death rates and less pain because of drugs like morphine. Still, as populations age the incidence of cancer will grow.
The different reactions S. Lochlain Jain and I had to a cancer diagnosis can be attributed in large part to our contrasting stages in life, she in the midst and me at the end. But, as I’ve noted, we also differ in our assumptions about competence and responsibility in our world. For Jain, human mistakes and malfeasance, particularly in the health-care field, deserve more blame, if not penalization. I believe there is a limit to how much human beings can be blamed for acting as they normally do. While my blood can occasionally boil at human misdeeds and stupidity, upon reflection I consider humans to be a groping species, prone to the blunders such as those that manifest when cancer exists. That’s not to excuse deliberate abuses, of which, as Jain documents, there are many. But ultimately we can’t attribute all our cancers or other diseases to villainous human sources. Much more often we’re inadequate rather than consciously evil.
Every day when I read the New York Times, I find reports of one governmental, bureaucratic, corporate, and organizational screw up after another. Are we expecting too much of a limited species—humans? Is Jain holding the medical community to a standard that others consistently fail to meet? Why should doctors—such as Dr. Nordic, who denies biopsies—be any more competent than politicians, corporate executives, academics, chefs, and plumbers?
Of course, with doctors it’s often a matter of life and death, not just a burst pipe. Pipes can be replaced, but corpses are a total loss. But we demand more from our doctors than we do from ourselves. After all, we lead life styles that make us vulnerable to cancer and other diseases—eating red meat, drinking alcohol, hanging out with smokers, failing to exercise, being inattentive to our bodies and our health. Then we expect experts with medical degrees to heal us, and are resentful if they don’t.
Yet think of how long physicians believed in the four humors, recommended bleeding with leeches, failed to realize they should sterilize surgical instruments or wash their hands, missed the connection of tobacco and disease, and, more recently, thought that hacking away bone and tissue was the best method of treating women with breast cancer. These blunders were the consequence of ignorance rather than malfeasance. No doubt the future will see similar folly in many contemporary practices.
Let’s face it, we humans just blunder along, achieving what we do after wallowing in trial and error, often denying the errors. We can be petty and self-serving, if not self-destructive. Often we are indifferent to the sufferings of others and apt to work against our own interests. Territorial and doctrinal disputes lead us to engage in the irrational slaughter of our neighbors. In occasional acts of compassion and creation we elevate ourselves, but then regress to the nadir of our frailties.
Meanwhile, it is also the case that our lives are better in many ways today than in the past, though the notion of ongoing progress is questionable. Our medical understanding and technology does become increasingly sophisticated. People live longer. But we ignore or deny negative consequences. We even undermine the good we do by submitting to ignorant dogmas and egregious miscalculations. Consider the many in power who refuse to acknowledge climate change.
The Inevitability of Death
To a point, Jain makes a series of convincing cases against the various industries and professions that exist because of and even take advantage of cancer. The medical system is guilty of exacerbating errors that are one of the nation’s leading causes of death. Still, Jain is one of a small percentage of her age group who are coping with a malignancy, a percentage that is projected not to change despite the toxicity all around us. All that bad stuff will accumulate for the over-65s. As we age the mechanisms that regenerate our cells go out of whack, perhaps roiled by carcinogens.
In the final chapter of Malignant, Jain, in effect, pulls back and takes a more philosophical view of cancer, acknowledging the many unknowns. She continues to be upset by the uncertainties of experts, the lives lost because of ignorance, the frustration of what-might-have-been. She concludes:
I began this book in order to explore cancer—the noun—but in writing about it I’ve come to realize again, as I did when living it, that cancer is also a verb, an adjective, an invective, a shout-out, indeed, a grammar all its own. I offer this book in an attempt to speak to—and from within—the cancer complex, to understand how the constituent parts of this experience spin the web that we call cancer and, unless we are vigilant, entrap us in it. I want a new version of accounting, a bigger, richer vocabulary, and a voice to speak it with.
All things considered, Jain and I were both lucky to face our malignancies when we did, at a time when breast cancer did not mean mutilating surgeries, when diseased bladders could find prosthetic substitutes, when chemotherapy did not mean hours of miserable retching, when our survival was much more probable. Jain and I are fortunate to have missed the miseries of the past. No doubt future victims will find it yet easier to cope. Perhaps one day the billions devoted to scientific cancer research will pay off, and cancer will go the way of tuberculosis as a fatal disease. Still, something else will get us in the end. That’s one price of being alive.
Walter Cummins’s sixth short story collection, Habitat: stories of bent realism, was published by Del Sol Press in 2013. He teaches in the MFA in Creative Writing Program at Fairleigh Dickinson University. He is co-publisher of Serving House Books.
“Let’s face it, we humans just blunder along.” This is wisdom as rare as it is important. We are indeed an imperfect species trying to make sense of the mixture of history, chance, circumstances, our state of knowledge, and the personal perspectives that makes up our negotiations with life. We have to keep trying to get it “right,” but we can’t solve the “problem” by the easy solution of easy villains. We are all, as the song says, “dancing in the dark.” But we don’t stop dancing because the lights went out.
Hi Walter, After a recent abnormal Pap, I’m in the early stages of a cancer diagnoses for what appears to be a very curable type of cancer. A
couple things you wrote really resonated with me
“While the news did keep me awake with dark thoughts, in the clear light of day I couldn’t deny the inevitability of some dire diagnosis at my age”
“not quite fatalism, more like resignation,”
Like you, I had some initial dark thoughts and suspect I’ll have more, yet mostly I am optimistic and trying to take it a day at a time.
“But do they deliberately cause or increase cancer to create markets? I may be naïve in finding that unlikely, though the pharmaceutical companies certainly profit from cancer’s existence. Would they be pleased if a cure, e.g., a vaccine, eliminated the need for their drugs and obliterated a market? That’s debatable.”
I’m reminded that Churchill when presented with the photographic evidence of the concentration camps refused to believe the Holocaust was occurring. Grand Institutionalized Murder?? Society couldn’t produce such wickedness. Tut tut.
The recent case of Farid Fata shows that when people choose to bury their heads in the sand and can’t accept that people employed in “Healthcare” are somehow beyond reproach, those people can literally get away with murder.
I’ve worked with plenty of Oncologists, and believe me, they are certainly not beyond reproach, so I certainly wouldn’t be surprised by anything a Pharmaceutical Company or their reps would do for profits.
You might also want to check out this policy brief from the Rebecca Project which shows that the (mean) spirit of Tuskegee is still flourishing where ever they can get away with it today.
Click to access nonconsensualresearch20111120.pdf