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Key points
- Cancer is our most feared disease, but in some ways that fear is out of date and harmful.
- Medicine is starting to recognize and to try to reduce those harms.
- Taking the frightening word "cancer" out of diagnoses of nonthreatening types of disease has been proposed.
The massive effort to reduce the death toll from cancer has made stunning progress. Though it is still the second leading cause of death in the United States, since 1990, the mortality rate is down roughly one-third. More than half of all cancers can now be treated as chronic conditions, or cured outright. A diagnosis of cancer is no longer a death sentence.
But a majority of the public still believes that cancer always means death. That disconnect, between what was much closer to the truth decades ago and what is true now, leads to enormous harm all by itself. Encouragingly, however, work to reduce that harm is now joining the fight against the disease itself, in a many-faceted effort that is also beginning to save lives and reduce harm.
The Overdiagnosis Movement
Much of this work is coming from what might be called "The Overdiagnosis Movement." Doctors and researchers have begun to realize the harm that can be caused by “the labeling of a person with a disease or an abnormal condition that would not have caused the person harm if left undiscovered.” This is overdiagnosis, a health threat only recently formally recognized in medicine, that often sets off medical cascades of testing and treatment that are sometimes harmful, even fatal.
A major focus of this work has been on overdiagnosed cancer. More perceptive cancer screening technologies now quite often detect types of the disease—ductal carcinoma in situ (DCIS) breast cancer, many cases of prostate cancer, the vast majority of thyroid cancers, and even some lung cancers—that look like cancer under a microscope but that are so slow or nongrowing that they are highly unlikely to ever cause any harm. When patients diagnosed with these cancers hear the dreaded words “You have cancer,” despite reassurance from their physician that their disease poses practically no threat, the now-outdated fear that all cancer kills drives many to choose more aggressive and riskier treatment than their clinical conditions require. Annually, thousands are seriously harmed by these “fear-ectomies.” Hundreds are killed. In my book, Curing Cancer-phobia, I estimate that roughly $5.3 billion is spent each year treating cancer conditions that frighten but do not physically threaten.
To reduce this harm, one proposal is to take the frightening “C word” out of the diagnoses of diseases that are highly unlikely to ever do what most people still fear cancer always does. While many doctors are resisting that change for breast and prostate cancers, this has been accomplished for the most common type of thyroid cancer, which used to be called "non-invasive encapsulated follicular variant of papillary thryoid carcinoma (EFVPTC)," and is now called “non-invasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP).” Still a mouthful, but the word “carcinoma” is gone. “Something had to be done,” said Dr. Yuri Nikiforov, one of the champions of the change. “We are doing more harm than good by treating these tumors in the same way that we treat aggressive cancers.”
But diagnostic semantics is just one area where progress has begun. Another change has reduced the harm from overtreatment for nonthreatening prostate cancer. Confident that they can reliably identify which cancers will be low-risk (using what is called the Gleason Score), urologists agreed that patients should be given the choice of watchful waiting (periodic prostate-specific antigen [PSA] testing) or active surveillance (periodic biopsies), rather than only the option of yes or no to surgery. That simple change has had remarkable results. Between 2010, when it took effect, and 2015, the number of men over 55 choosing either active surveillance or watchful waiting rather than riskier prostatectomy surgery nearly tripled, from 22 percent to about 60 percent. Among men 55 and younger, the rate quadrupled, from 9 percent in 2010 to 35 percent in 2015. While the mortality rate for prostate cancer has increased slightly, tens of thousands of men have been spared the loss of erectile function or urinary incontinence, common side effects of prostatectomies. Hundreds of lives have been saved from the rare but real risk of death from surgical complications.
Ongoing surveillance rather than surgery, now available for thyroid cancer as well, has also been proposed for DCIS, but fierce resistance has blocked that change. Breast cancer doctors can only officially—which means legally—recommend surgery, either a lumpectomy or mastectomy. Opponents of the change argue there is still not enough evidence that treatment for DCIS with ongoing monitoring will save as many lives as surgery, though decades of experience strongly suggest that long-term mortality for most DCIS is nearly 100 percent with or without surgery.
Benefits and Harms of Screening
Another change that’s just beginning is the effort to fully inform people about the surprisingly minimal benefits of most forms of cancer screening and, more surprisingly, about screening’s common harms. The National Breast Cancer Coalition and Susan G Komen advocacy groups both prominently warn women that mammography offers only minimal life-saving benefit (two lives saved per 1,000 women screened over 10 years) and can lead to serious harm from overdiagnosis and overtreatment. In 2017, the National Institutes of Health newsletter published an article titled “To Screen or Not to Screen? The Benefits and Harms of Screening Tests.”
Expert medical panels in Switzerland and France reviewed the research and found that, at the population level, the benefits of mammography of asymptomatic women at average risk are outweighed by the harms and proposed eliminating general population screening. Those recommendations were rejected after predictable howls from the public and most of the medical and cancer advocacy communities, but France now requires such screening programs to “Provide complete and neutral information for men and women, the public, and doctors that acknowledges the limitations of mammography and the problem of overdiagnosis.” Unfortunately, very few mammography programs in the United States offer honest, balanced information about screening’s minimal benefits and notable harms.
But here, too, there is progress. The “shared decision-making” movement has developed numerous tools to help doctors talk to their patients about the pros and cons of screening. Unfortunately, many doctors admit they don’t use these tools because insurers don't compensate them for the time it takes to do so.
Other efforts, however, are making decision-making tools available directly to the public, like an infographic on breast cancer screening from the Canadian Task Force on Preventive Health Care or one from the Harding Center for Risk Literacy.
It is profoundly challenging to dare suggest that our fear of cancer, our most feared disease, may in some ways be harmful all by itself. The disease is a cruel killer that has caused terrible suffering in many of our lives. It certainly has in mine. But, considered at the population level, the gap between our established fears of cancer and the progress we’ve made is in fact doing enormous and serious harm. It is encouraging that this threat is now being recognized and that work to reduce its harm is joining the work to reduce the harm from the disease itself.
References
Laura Esserman and Scott Eggener. Not Everything We Call Cancer Should Be Called Cancer. New York Times. August 30, 2023.
