By Diana Zuckerman, PhD, president of the Cancer Prevention and Treatment Fund
The “War on Cancer” might finally be making good progress—certainly more progress than most of the wars around the world today. We are making real strides in terms of learning about the causes of cancer, the risks and benefits of various tests used to screen for cancer, and new possibilities for how to cure it.
We’re falling short, however, on communicating what we know to patients and their family members. Better communication about treatment options will help millions of people avoid ever developing cancer, and also prevent unnecessarily radical and harmful treatments for those who are diagnosed with cancer.
I got involved in this issue two decades ago when I realized how often the treatment for cancer can be worse than the disease. At the time, I was shocked by how often medications aimed at treating one type of cancer could cause a different type of cancer. And I was also shocked that so many women were undergoing mastectomies they did not need. The research was clear: Those women would live just as long by undergoing a lumpectomy, a far less radical surgery.
My perhaps-Pollyannaish solution was to start a nonprofit organization that would bridge the gap between the expensive and extensive research being conducted and what patients understood about which treatments were likely to work best for them.
I soon learned that there were a few well-known cancer charities that were attracting all the donations (from millions of people and every company in the country), and unfortunately, they seemed more focused on organizing highly publicized events rather than actually helping patients get the best treatments. Their well-funded PR staff helped them control what “everyone knows” about how to prevent or cure cancer—including information that was just plain wrong.
Although overtreatment and misinformation are especially obvious when it comes to breast cancer (for example, there is absolutely no evidence that monthly self-exams save lives), men receive equally confusing messages about prostate cancer. The similarities are uncanny: In both cases, adults without symptoms are strongly urged to get annual prostate or breast cancer screenings that frighten them into thinking they have potentially fatal cancer. In both cases, the diagnosis is less likely to be fatal compared to many other cancers.
And in both cases the treatment can be traumatizing for many (women losing their breasts, men becoming impotent or incontinent), amplifying fear in the general public of even the earliest markers and least lethal forms of these cancers. And so, the cycle continues: People with the earliest or least conclusive diagnoses often opt for the most aggressive treatment, unnecessarily harming their body or body image in ways that the cancer might never have.
There is good news for newly diagnosed patients: persuasive evidence that a sizable percentage of men and women who were diagnosed and treated would have lived just as long (perhaps longer) without treatment, or with much less radical treatment. For women with what used to be called “Stage 0” breast cancer—and for men with a very slow-growing prostate cancer—surgery, radiation, and other radical treatments often do more harm than good.
Research has clearly shown that for a substantial minority of patients, “active surveillance”—no surgery, no radiation, but just regular screening—is a very safe alternative to treatment. Many doctors know this. But many patients do not, because most doctors are not very good at communicating this kind of complicated “we’re not exactly sure what will happen if you don’t have surgery” information. And despite billions spent by our government, companies, and charities on finding a cure for cancer, almost nothing is spent on how to explain the risks and benefits of different treatments or “active surveillance” to patients so that they truly understand it.
There’s a saying that to carpenters most problems can be solved with a hammer, and to surgeons most problems can be solved with a knife. So I was surprised when an older and very distinguished cancer surgeon said to me, “If patients are choosing unnecessary surgery it means we’re not explaining it well.”
That’s why I like to talk to patients and ask them how best to explain complicated medical information, so that every individual can have the information he or she needs to make the best decisions for him- or herself. At Cancer Prevention and Treatment Fund, we understand that patients’ decisions are based on what they hope and fear and need, not just what they know. So, I’d like to hear from you! Here are our booklets for DCIS patients and prostate cancer screening. I hope these will be helpful to you or anyone you know who might be struggling with these difficult decisions.
Diana Zuckerman is the president of the Cancer Prevention and Treatment Fund. She received her PhD from Ohio State University and was a postdoctoral fellow in epidemiology and public health at Yale Medical School. After serving on the faculty of Vassar and Yale and as a researcher at Harvard, Dr. Zuckerman spent a dozen years as a health policy expert in the U.S. Congress and a senior policy adviser in the Clinton White House. She is the author of five books, several book chapters, and dozens of articles in medical and academic journals as well as in newspapers across the country.
Thanks for this column. I think more people are beginning to understand this.
The big issue that most medical professionals do not address well enough, at least in what I have read in articles encouraging a thoughtful approach to radical treatment is this: metasasis.
Nearly everyone I know would rather GET IT OUT of their bodies. They may not be worried about the cancer in its current site, but are extremely worried about it spreading to the spine, lungs, or brain. Once you know that tumors are throwing off cells into the bloodstream or lymphatic system, it is very difficult to be persuaded to keep that growth in your body.
My mother currently has kidney cancer in her only kidney and the best treatment at her age is to do nothing as the risk to the viability of her kidney is too great — the tumor itself is currently less harmful. We think.
I think the other issue is that there is just too much complexity for a lay person, whose life or the life of an adored family member is on the line from the most dread disease, to feel secure in any decision.
I REALLY appreciate this very sensible article. Thank you.
Thank you for this clear explanation. I’ve been wondering for a while if we’re over-treating some cancers. I will be sure to share this with my loved ones!
Thank you for your blog post. I’m too young to be diagnosed with DCIS since I won’t be old enough for a mammogram for many years, but if a friend or family member were diagnosed with DCIS, I would have been really frightened if the doctor described it as breast cancer. I am so glad to know about your DCIS booklet, and I am now going to share it with my family members. Thank you for your blog and the booklet, because you have made a very scary situation much more manageable and easier to digest.