Those of us affected by cancer generally learn pretty quickly whether we have a “good” cancer or a “bad” cancer—that is, whether the cancer we have is one that is easily treated, with high rates of success, or not.
And then we learn pretty quickly afterwards that it’s not that simple. That rates of survivorship over the long haul (for most purposes, tracked for five years) vary also by the stage and grade of one’s cancer, as well as by one’s age at diagnosis, and by one’s race and socioeconomic status. And sometimes by one’s sex as well, if it isn’t a sex-specific kind of cancer.
These may seem like obvious factors for someone with exposure to public health statistics, but for most of us, it’s an entirely new world we encounter. If, that is, we choose to do deal with it at all. I have met several people with different kinds of cancer who are simply not interested in or curious about the statistical profile that they might fit. I can appreciate that position; it’s not at all clear to me at least that such information is especially helpful. As one popular saying goes among people with cancer: “We are each a statistic of one.” In the most important measure to each of us—how well we are doing—that is probably a fair statement.
In dealing with cancer myself, statistics have been a mixed bag. I’m younger than the typical woman to get my kind of cancer by about ten years. (I have endometrial adenocarcinoma—although for accuracy I should note that the statistical data pool from which I am drawing these figures groups all “Cancer of the Corpus or Uterus, NOS (not otherwise specified)” together.) [These stats are taken from SEER; please see below.] Only about 19% of this kind of cancer is diagnosed in women of my age range.
As cancers go, uterine/endometrial cancer is pretty common, relatively speaking; it’s the most common gynecological cancer in the U.S. Ovarian cancer is less common, but more feared because it’s harder to detect and then harder to treat when advanced. Still, endo ca is pretty rare overall: only about 24 out of 100,000 U.S. women will have this diagnosis in any given year. Two aspects of this prevalence are disturbing, however: More white women than black women are diagnosed with this cancer, and yet more black women die of it; in the past few years (2006-2010) there has been a noticeable uptick in cancer incidence, a statistically-significant rise of 2.9% over the ten years preceding that period. Both of these issues may well be covered in other diaries to follow.
When I was first diagnosed, in the winter of 2011, I spent hours poring over medical journal articles searching for clues about my own prognosis. I read all the research reports, practice updates, and meta-analyses I could find in PubMed and other online databases that track medical journal articles. Eventually I reached a disheartening conclusion, which my oncologist did not dispute: that there is no consensus among clinicians regarding the most successful treatments for my particular grade, stage, and type of cancer. There is simply too much individual variation in the cellular structure of the cancer, along with the still-unknown factors that permit and encourage metastasis, for a one-size-fits-all treatment regimen.
My own odds of recovery have varied over time, depending on the amount of information available and the success of various treatment regimes. When I was first diagnosed, for example, the oncologist presumed a Stage I progression, given the evidence of external exams and my D & C. At surgery, however, it was discovered that I was among the unlucky 10-15% of women with a clinical Stage I diagnosis whose FIGO staging turns out to be worse. My prospects of surviving for five years thus dropped from about 90% to about 50%. Sobering, to be sure.
Then, my situation worsened again when I was among the majority of women (somewhere over 50%) with my grade and stage of cancer for whom the chemo cocktail I received was not effective. I must have heard those chances before I embarked on the chemo treatments, but I don’t think I was listening; I certainly assumed I’d be in the category of women whose chemo was successful. At that point, my options under allopathic treatment were either to take a hormone for which the success rate was approximately 20% at best (that is, for any kind of progression-free survival) or to go looking for a clinical trial, which by definition offers no guarantee of any success at all.
Fortunately for me, I am among the small minority of women with my type, grade, and stage of cancer for whom this hormone treatment is successful. Dramatically so—because not only have I had no progression of lesions, I’ve eliminated those that were detected almost two years ago. That’s a rare outcome indeed.
Or is it? Since I’ve been heavily invested in other sorts of remedies as well, which I started at the same time as the hormone therapy, to what can I attribute my good health? My own case provides a powerful example of the unique course of cancer treatment and recovery, one that is a statistical anomaly in a good way so far after all.
A note about cancer statistics before I pass this dialogue on to you. Individual medical journal articles and meta-analyses can provide detailed statistics about the success of treatment options if one wants to track them down. I had quite a file at one point, then tossed them out of frustration; they weren’t going to give me the answers I wanted. For the basic epidemiological information about cancer incidence and rates of survival, which can be fairly detailed by race, age, sex, type of cancer, and state, the go-to source is the SEER data from the National Cancer Institute, a department of the National Institutes of Health. SEER stands for Surveillance Epidemiology and End Results; this description of their activity is from their home page:
We collect information on incidence, prevalence and survival from specific geographic areas representing 28 percent of the US population and compile reports on all of these plus cancer mortality for the entire country.The American Cancer Society also produces reports on cancer incidence and survival rates, though they are not as technical because they're writing for a lay audience. On the other hand, their reportage can also be more pointed. Here, for example, is the abstract for their report in last year’s CA: A Cancer Journal for Clinicians (with full free text available via that link):
Each year, the American Cancer Society estimates the numbers of new cancer cases and deaths expected in the United States in the current year and compiles the most recent data on cancer incidence, mortality, and survival based on incidence data from the National Cancer Institute, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries and mortality data from the National Center for Health Statistics. A total of 1,596,670 new cancer cases and 571,950 deaths from cancer are projected to occur in the United States in 2011. Overall cancer incidence rates were stable in men in the most recent time period after decreasing by 1.9% per year from 2001 to 2005; in women, incidence rates have been declining by 0.6% annually since 1998. Overall cancer death rates decreased in all racial/ethnic groups in both men and women from 1998 through 2007, with the exception of American Indian/Alaska Native women, in whom rates were stable. African American and Hispanic men showed the largest annual decreases in cancer death rates during this time period (2.6% and 2.5%, respectively). Lung cancer death rates showed a significant decline in women after continuously increasing since the 1930s. The reduction in the overall cancer death rates since 1990 in men and 1991 in women translates to the avoidance of about 898,000 deaths from cancer. However, this progress has not benefitted all segments of the population equally; cancer death rates for individuals with the least education are more than twice those of the most educated. The elimination of educational and racial disparities could potentially have avoided about 37% (60,370) of the premature cancer deaths among individuals aged 25 to 64 years in 2007 alone. Further progress can be accelerated by applying existing cancer control knowledge across all segments of the population with an emphasis on those groups in the lowest socioeconomic bracket. (emphasis added)These larger questions about statistics—those showing uneven gains in the past few years—are worth addressing, of course. For today, I’m interested in your own particular micro-statistical universe. Are you part of the mainstream in terms of your particular cancer? An outlier in terms of your diagnosis or your survival? Do you prefer not to consider numbers like these at all? What kinds of statistics, if any, interest you? I’m curious; the floor is yours.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.