Words Used to Describe DCIS Affect Treatment Choices

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A study suggests that when the word “cancer” was used to describe DCIS (ductal carcinoma in situ), women thought that more aggressive treatment, such as surgery, was better than less aggressive treatment, such as closely monitoring the area.

When DCIS was described as a breast lesion or abnormal cells, women chose less aggressive treatment.

The research was published online on Aug. 26, 2013 by JAMA Internal Medicine. Read the abstract of “Impact of Ductal Carcinoma In Situ Terminology on Patient Preferences.”

DCIS is the most common type of non-invasive breast cancer and is currently considered stage 0 cancer. DCIS isn’t life threatening, but can increase the risk of developing invasive breast cancer later in life.

In July 2013, a group of National Cancer Institute experts recommended changing how cancer is classified, including changing the name of DCIS so “carcinoma” isn’t in the name. The experts believe that taking cancer out of the name would make the condition less scary and might reassure some women who opt not to have aggressive treatment for DCIS. The experts recommended using the word “cancer” only for lesions that would likely cause death if not treated.

In this study, 394 healthy women with no history of breast cancer were given three scenarios describing a DCIS diagnosis. DCIS was described as:

  • non-invasive breast cancer
  • a breast lesion
  • abnormal cells

The list of treatment choices and likely outcomes of the treatment choices (risks of developing invasive breast cancer or dying) that went with each scenario were exactly the same. The only differences between each scenario were the words used to describe DCIS.

After they read each scenario, the women were asked to pick one of three treatment options:

  • surgery
  • medicine
  • careful monitoring

The researchers randomly changed the order of the scenarios among the women, but all 394 women read each scenario and made a treatment choice based on that scenario.

When DCIS was described as “non-invasive breast cancer”:

  • 47% of the women chose surgery
  • 20% chose medicine
  • 33% chose careful monitoring

When DCIS was described as "a breast lesion”:

  • 34% chose surgery
  • 18% chose medicine
  • 48% chose careful monitoring

When DCIS was described as “abnormal cells”:

  • 31% chose surgery
  • 21% chose medicine
  • 48% chose careful monitoring

The women in this study were all well-insured and well-educated, with higher-than-average incomes. So it’s not clear if the results would apply to all women diagnosed with DCIS. Still, the researchers believe that the words used to describe DCIS had an important effect on how women felt about treatment choices.

At Breastcancer.org, we recognize that not all cancers or precancerous conditions grow and metastasize. Some suspicious areas that are found would probably never cause any problems if they hadn’t been detected.

But right now, tests aren’t available that say for certain which suspicious areas will turn out to be fast-growing cancers and which will never grow and cause a problem. Because we can’t be sure, it makes sense to treat suspicious areas as aggressively as women and their doctors feel is necessary.

The change in the name of certain conditions may come to pass, though it will likely take several years. Taking “carcinoma” out of the name of DCIS wouldn’t change treatment recommendations, but may ease some women’s stress and worry about their diagnoses. Women diagnosed with larger, high-grade DCIS (or whatever the new name might be) would still receive more aggressive treatment than women diagnosed with small, low-grade DCIS.

Still, some doctors and women are worried that if “carcinoma” is removed from the name of DCIS and other precancerous conditions, insurance companies may not pay for more aggressive treatment.

Everyone does agree that doctors need to talk to their patients clearly and in detail about the condition that’s been found and if it’s likely to grow and spread or not.

If you’ve been diagnosed with DCIS or another precancerous condition that raises your risk of developing invasive breast cancer later in life, make sure you talk to your doctor about all the characteristics of your condition. You and your doctor will consider a number of factors when deciding on how to treat or monitor the condition, including:

  • the characteristics of the precancerous condition
  • your age
  • any other health problems you have
  • your medical history
  • the results of any genetic testing you may have had
  • your preferences

Together, you and your doctor will come up with a treatment plan that makes the most sense for you and your unique situation.

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