Women told they have breast ‘cancer’ more likely to want surgery
Women were more likely to want surgery when they were told they had a type of breast cancer than when the diagnosis was a breast lesion or a group of abnormal cells — even though all three scenarios described the same disease. The findings, reported Monday in the journal JAMA Internal Medicine, offer a new way to gauge the power of the word “cancer.”
The words doctors use to tell a woman she has ductal carcinoma in situ can make a big difference in the treatment she chooses. Ductal carcinoma in situ, or DCIS, can be an early form of breast cancer. But in many cases, the tumor never grows beyond the milk duct where it was found. If it does invade the surrounding breast tissue, it can take as long as 40 years to do so.
All that uncertainty has led doctors to describe DCIS in a variety of ways. Sometimes they tell women that it’s a stage 0 cancer, or that it’s a noninvasive tumor. “Carcinoma” itself is synonymous with cancer. Just a few weeks ago, an expert panel convened by the National Cancer Institute recommended that the name for DCIS be changed to something that sounds less threatening. As they explained in an editorial published in the Journal of the American Medical Assn.:
“The word ‘cancer’ often invokes the specter of an inexorably lethal process; however, cancers are heterogeneous and can follow multiple paths, not all of which progress to metastases and death, and include indolent disease that causes no harm during the patient’s lifetime.”
For the new study, researchers from UC San Francisco, Massachusetts General Hospital and Duke University Medical Center recruited 394 women who were in fine health and asked them to imagine they were diagnosed with DCIS. The diagnosis was presented three ways: as “noninvasive breast cancer,” a “breast lesion” or “abnormal cells.”
In all three cases, the treatment options and outcomes were the same. Yet there were clear differences in the way women reacted:
Ductal carcinoma in situ (DCIS) is a noninvasive condition. DCIS can progress to become invasive cancer, but estimates of the likelihood of this vary widely. Some people include DCIS in breast cancer statistics. The frequency of the diagnosis of DCIS has increased markedly in the United States since the widespread use of screening mammography. In 1998, DCIS accounted for about 18% of all newly diagnosed invasive plus noninvasive breast tumors in the United States.
Very few cases of DCIS present as a palpable mass; 80% are diagnosed by mammography alone. DCIS comprises a heterogeneous group of histopathologic lesions that have been classified into several subtypes based primarily on architectural pattern: micropapillary, papillary, solid, cribriform, and comedo. Comedo-type DCIS consists of cells that appear cytologically malignant, with the presence of high-grade nuclei, pleomorphism, and abundant central luminal necrosis. Comedo-type DCIS appears to be more aggressive, with a higher probability of associated invasive ductal carcinoma.
When the diagnosis was “noninvasive cancer,” 47% of women said they would want a lumpectomy or mastectomy. (The other 53% chose medication or active surveillance.)
When the diagnosis was “breast lesion,” 34% chose a surgical option.
When the diagnosis was “abnormal cells,” 31% chose a surgical option.
“Our survey specifically reminded the participants that risks and benefits were the same among all 3 scenarios; however, excluding the word cancer in the diagnosis shifted many participants to choose a less-invasive option,” the researchers reported. They took it as a sign that many of these women really didn’t want to have surgery but were scared into picking it when they heard the word “cancer.”
Ductal carcinoma in situ (DCIS) is the most common type of non-invasive breast cancer. Ductal means that the cancer starts inside the milk ducts, carcinoma refers to any cancer that begins in the skin or other tissues (including breast tissue) that cover or line the internal organs, and in situ means “in its original place.” DCIS is called “non-invasive” because it hasn’t spread beyond the milk duct into any normal surrounding breast tissue. DCIS isn’t life-threatening, but having DCIS can increase the risk of developing an invasive breast cancer later on.
When you have had DCIS, you are at higher risk for the cancer coming back or for developing a new breast cancer than a person who has never had breast cancer before. Most recurrences happen within the 5 to 10 years after initial diagnosis. The chances of a recurrence are under 30%.
Women who have breast-conserving surgery (lumpectomy) for DCIS without radiation therapy have about a 25% to 30% chance of having a recurrence at some point in the future. Including radiation therapy in the treatment plan after surgery drops the risk of recurrence to about 15%. Learn what additional steps you can take to lower your risk of a new breast cancer diagnosis or a recurrence in the Lower Your Risk section. If breast cancer does come back after earlier DCIS treatment, the recurrence is non-invasive (DCIS again) about half the time and invasive about half the time.
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By Karen Kaplan