which increased a couple of percent each year until the chart ended when each turned seventy-nine. How weird to see my little sisters’ lives as a bar chart on the desk of a genetic counselor who knows nothing, absolutely nothing, else about them. I tried to picture my younger sister at seventy-nine. Would she still live in Vancouver? Would I get to see her? Would she still be my little sister? If I died, would she still be my sister? Then I chided myself for my narcissism.
My other sister, younger still, has an even higher risk for cancer. I couldn’t get my head around it until I realized that it is all about time: the older sister has lived cancer-free for eight extra years, and so has weighed in on one side of the calculated risk, while the younger sister has to live through those still risky years. Irony ensued when my oncologist told me that even at age 110 I will have a higher risk for cancer than the “general population.” Even my most doddering imagined future carries a threat.
In projecting a misleading solidity, the numbers don’t count only what’s already out there. They become a basis of evidence for arguments about cancer by virtue of the preset categories for data collection.17 Numbers can seem equivalent and then tradable. Before you know it, you can exchange lives for other things, especially money, forgetting that the numbers once represented real people, with real communities and real histories and complex genealogies. Taking an objective count can be as misleading as it is illuminating.
I don’t particularly want to join the head-counting tribe, but since numbers so often define this disease, it’s worth examining them.
As the numbers stand now, one in two American men, and one in three American women, will be diagnosed with an invasive form of cancer during their lifetimes. Each day, over 1,500 Americans die of cancer, and a quarter of all Americans will eventually die from this disease. While more men will ultimately develop cancer, under the age of 39, women are significantly more likley to develop invasive cancers.18 Cancer has been the leading cause of death for Americans under 85 since 2001, and is the largest killer of women aged 34–70 and of men aged 60–79.19 Of all diseases, leukemia is the biggest killer for men under 40; after 40 it’s lung and bronchus cancers. Breast cancer is the main killer, period, of women aged 20–59.20
Currently, more than thirteen million cancer survivors live in the United States.21 Overall, cancer death rates are slightly declining: between 2004 and 2008, death rates decreased 1.3 percent per year.22 Some people consider the falling death rate the result of decreasing smoking rates, others attribute it to the success of early detection, and still others consider the decline meaningless given its minuscule size and the wide spread of sundry diseases it covers.
Different cancer registries use different categories to collect data, including the site at which the cancer first presents; stage at diagnosis; the patient’s age, race, and education; and the geographic location of treatment. The American Cancer Society estimates absolute numbers of cancer deaths each year as follows: lung and bronchus: 160,340 (with a median age at death of 72); colon: 51,690 (median age, 74); breast: 39,510 (female), 410 (male); prostate: 28,170.23 Cancer incidence rates, as opposed to death rates, offer quite a different lens. For example, the lung and bronchus cancer incidence rate, with 226,160 diagnoses annually, is about 41 percent higher than the death rate, while there are nearly three times the number of colon cancer diagnoses (143,460) than deaths each year. Breast cancer incidence is about six times the annual death rate for both men (with 2,190 diagnoses) and women (226,870); the prostate cancer incidence rate (241,740 diagnoses) is nearly ten times the annual death rate. About 360 men a year die of testicular cancer, with a median age of forty-four. Over two million Americans a year are diagnosed with nonmelanoma skin cancer, a disease with fewer than a thousand deaths annually; meanwhile, the 76,250 cases of melanoma each year correlate to about 9,180 deaths a year.24
Although the numbers vary from year to year, certain trends emerge. For example, testicular cancer incidence rates have increased by at least 75 percent since 1975 (although death rates have decreased to less than a third), and over the same timespan rates of brain cancers and central nervous system cancers have doubled for those aged 65 and over. Mortality rates for children under fourteen have declined by 66 percent over the past four decades, but incidence of cancers for those aged 1–19 increased by 19 percent between 1973 and 2002.25 Similarly, rates of thyroid and rectal cancer are increasing. For prostate and colon cancer, incidence rates spiked with the introduction of screening, and then decreased. Between 1975 and 2003, incidence rates of prostate cancer nearly doubled while death rates decreased by about 15 percent (from 2.5/100,000 for men under 65 and 227.5/100,000 for men over 65 in 1975 to 1.9 and 196.9, respectively). Over half of pancreatic cancers are diagnosed at later stages, when the five-year survival is only 2 percent.26 Some cancers have been clearly linked to hormonal use, asbestos, cigarettes, hair spray, and nuclear fallout, but stats in themselves remain obdurately unable to produce causal explanations.27
It might be tempting to stop, draw conclusions, and compare different types of cancers. But any such attempt would be immediately stymied. Cancers, for example, are often graded to determine how aggressive they are. Then again, doctors will often tell a patient with an aggressive tumor that he is lucky, since chemotherapy tends to work better on more quickly dividing cells. Although cancers are listed in the registries by the organ that hosts the initial cell division, these categories mislead, since even tumors that start in a particular organ can be a completely different type of cancer. Occasionally physicians can’t tell where a widely metastasized cancer started. Such categories can have significance for detection, though, as witnessed by the recent introduction of the term “below the waist” cancers. This term calls attention to the way that curtains of discretion can affect the spread of the disease and the likelihood that one will seek advice for symptoms that most people don’t want to hear about, let alone talk about.
Already, the statistics of incidence and mortality confuse. Add to this race, stage at diagnosis, time to recurrence, a three-to-four-year time lag in collating cancer data, and the fact that many states do not keep adequate registration records, and cancer becomes virtually impossible to track. And of course, although statistics mark diagnoses and deaths en masse, the actuality of “one here and one there” means that each case alters, for better or worse, the flourishing of whole communities.
To be sure, each cancer comes with its own unique way of torturing people. Some cancers present so rarely that virtually nothing is known about how, why, and when they spread. Others may begin in different organs but attack in similar ways, such as by causing loss of a vocal chord, making it difficult to walk, or changing physical appearance. Two people with random cancers might find solace by sharing similar prognoses rather than the etiology of a disease. Debate rages about whether very early “precancers” should fall under the category “cancer” at all (a question I take up in chapter 7). This debate carries dramatic implications for the statistics, not only in how the data are listed, but for policy decisions that affect screening and treatment protocols that are based on extrapolations from population data.
People with good prognoses die, and people with bad prognoses live, so churlishness about who gets to carry the “real” cancer card can only take one so far. Besides, people who survive benefit everyone facing discrimination and counter the cancer-diagnosis-equals-death-sentence perception. Nonetheless, the very word cancer is so fraught that the fact that the cancer may be tiny and curable can be lost on a patient. Type of cancer can be confusing in another way as well: both Susan Sontag and my friend Jane “officially” died of leukemia, though the leukemia was the result of treatment for other cancers.
In their 1981 book The Causes of Cancer, Richard Doll and Richard Peto list three types of cancer of “outstanding importance” that, as of 1978, accounted for half of all cancers: lung, large bowel, and breast.28 These still remain the top killers, seemingly intractable medical and social issues despite the billions spent
