Not everything we call cancer should be called cancer

“You have cancer.”

Ask anyone who has been told this: It’s terrifying.

That’s one reason we need to rethink what we call cancer. Despite amazing advances in our understanding of the disease, we have neglected to update how we define what has been called “the emperor of all maladies.”

Some cancers have extraordinarily low risks of altering the quality or length of life but get lumped in with those that do. And that often leads to unnecessary treatment, disfigurement, side effects and a constellation of other psychologic, relationship and financial issues.

We are oncologists with expertise in prostate and breast cancers. We believe the medical community must reconsider what we call cancer in its earliest manifestations. So do a growing number of cancer experts around the world.

The word “cancer” is attributed to Hippocrates 2,500 years ago, though the disease was described by the Egyptians 2,500 years earlier. Then tumors could be seen or felt. Today, we also identify cancer based on blood samples, biopsies or surgically removed specimens meeting specific criteria under the microscope. But as newer and more sensitive technologies come into use, we are increasingly identifying medical conditions that might have gone undetected without any issues. This phenomenon of overdiagnosis is a well-documented consequence of screenings for breast and prostate cancer.

Early detection of cancer sounds intuitively attractive and in many cases saves lives. But automatically calling something cancer can lead to aggressive treatment, even if the cancer in question is unlikely to cause problems. For many cancers, the term simply doesn’t match how the disease behaves. As cancer surgeons, knowing what we now know, we wish we could go back and undiagnose or reclassify a significant proportion of our patients.

Let’s look at two examples. For prostate cancer, a biopsy showing a grade of Gleason 6 (also known as Grade Group 1) is considered low or very low risk. In breast cancer, diagnosis of ductal carcinoma in situ, or DCIS, is similarly low or very low risk, representing the very earliest, noninvasive stage of the disease.

These findings make up about 20 percent to 25 percent of all prostate and breast cancer diagnoses in the United States, involving about 100,000 people annually. These patients are routinely treated with surgery or radiation even though their conditions are not life threatening and cause no symptoms at the time they are spotted. To our knowledge, neither Gleason 6 nor DCIS spreads to other parts of the body unless more aggressive forms of cancer develop or are simultaneously present. They are more accurately explained as risk factors for prostate or breast cancers with malignant potential.

Millions of patients have been compelled by well-intentioned loved ones to “do something” upon hearing a cancer diagnosis. And why wouldn’t they? The dictionary definition of cancer is “a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis.” The patient’s assumption is that without treatment, the condition will rapidly or ultimately lead to metastases and death. Accordingly, many make the understandable choice of aggressive treatment they don’t require.

We need other approaches.

One is personalized screenings for the disease based on an individual’s risk. One of us, Dr. Esserman, has been testing this approach in breast cancer in a study that examines replacing the standard annual mammogram with recommended screening schedules based on such factors as age, genetics, lifestyle, health history and breast density. The goal is to do a better job of identifying who is at risk for what types of cancer (fast or slow growing), adjust when and how often to screen, and focus on early detection of fast growing cancers and prevention.

Another approach is to monitor these very early-stage cancers in what’s known as active surveillance, in which the condition is watched closely for changes but not treated until necessary. This approach is now increasingly used for early-stage prostate cancer; in Sweden, for instance, about 90 percent of these patients are put on active surveillance. The United States lags behind, with only about 60 percent of patients following this protocol. A long-term study of 1,800 men with low- or very low-risk prostate cancer begun in 1995 found that within the first 10 years, 48 percent had switched to treatment, most commonly because of a change in their cancer. Nevertheless, after 15 years, the risk of metastasis or death from prostate cancer was 0.1 percent.

For DCIS, despite a strong rationale for active surveillance and risk reduction strategies, these approaches have yet to be offered and only recently began to be tested in clinical trials.

Renaming very low-risk cancers would make it easier to convince patients when it’s appropriate to adopt monitoring and risk reduction as their approaches. Early-stage “cancers” that meet the microscopic definition of the disease (what a pathologist sees through the microscope) but not the clinical definition (a condition that is highly likely to grow, cause symptoms and has the potential to kill a person) could be designated as IDLE (indolent lesion of epithelial origin) or preneoplasia — anything but the dreaded C-word.

This has already been done for some types of thyroid, bladder, kidney, cervical and other cancers. After the diagnosis of cervical carcinoma in situ was changed to cervical intraepithelial neoplasia, fewer women underwent unnecessary hysterectomies. These conditions are not emergencies. As with any breast and prostate cancers, there is time to learn and decide on the best approach, evaluate treatments if required or consider being part of a clinical study.