Breast Cancer Knowledge Gap

Patients Without Internet Access Often Not Well Informed

From the WebMD Archives

Oct. 2, 2006 (Istanbul, Turkey) -- Women with breast cancer -- particularly those who are older and do not have Internet access -- are often not told about hormone treatments that can stop their cancer from coming back, researchers report.

In a survey of 547 postmenopausal women with early breast cancer from nine European countries, fewer than one in five said they knew about hormone treatment options (such as tamoxifen, Femara, Arimidex) or had a say in whether to take the drugs after undergoing surgery to remove their tumor.

Those with the lowest levels of involvement were women over age 60.

The results of the poll by the GAEA Initiative, a research-based program for women with early breast cancer, were presented at the annual meeting of the European Society for Medical Oncology (ESMO).

Breast Cancer Patients Left in Dark

"Our survey shows that information provided to patients about [hormone] therapy is sub-optimal," says presenter Yvonne Wengström, PhD, head of the nursing division at the Karolinska Institute in Stockholm, Sweden.

"Many patients were not even told about the available treatment choices. The patients who took part in the survey told us that they want to have more information about treatment and especially side effects," she tells WebMD.

For the survey, women were asked about their knowledge and understanding of breast cancer treatments and the risk of recurrence, as well as their involvement in treatment decision-making and their information and support needs.

Among other results:

  • Only 44% of women received information on how hormone treatment works.
  • 25% were informed about the potential severity of side effects.
  • 20% were told about the duration of side effects.
  • Just 22% were informed about the risk of a breast cancer recurrence at the end of hormone therapy.
  • 34% stated that they were not informed about support services at the time of diagnosis.

Other Breast Cancer Surveys Show Similar Results

Kathy Reymond, a cancer nurse in Milan, Italy, notes that other recent surveys have shown similar results.

In one survey of 130 women with breast cancer, only 13% said they could easily obtain treatment information, she says. And an e-survey showed only 33% of women had easy access to a second opinion, and only 13% were as involved as they would have liked in the decision-making process.


"All three surveys clearly showed that access to information and participation in the decision-making process is clearly related to three demographics: older age, lower level of education, and lack of Internet access, Reymond says.

"Cancer patients have a right to information and a right to be part of the decision-making process," Reymond says. "And they have a right to a second decision. But the reality is that the rights of these women are not being held up."

Adamos Adamou, MD, chairman of the ESMO Developing Countries Task Force, says regardless of age, the Internet is a valuable source of information about treatment options.

He notes that many societies, including the ESMO, the American Cancer Society, and the American Society of Clinical Oncology, offer not only information but also referrals to support groups.

Hormone Treatments a Cornerstone

More than 1.2 million women worldwide will be diagnosed with breast cancer this year, according to the World Health Organization. The American Cancer Society estimates that in 2006, there will be nearly 212,920 new cases of invasive breast cancer in women in the U.S.

About three in five of these women worldwide have tumors that are fueled by estrogen, making hormone therapy a cornerstone of regimens to prevent recurrences and improve survival after surgery.

Hormone treatments include the older drug tamoxifen, which prevents estrogen from acting on tumors, as well as newer agents known as aromatase inhibitors such as Femara, Aromasin, and Arimidex. They actually block an enzyme the body uses to make estrogen, thereby slashing the body’s production of estrogen altogether.

Women generally stay on the drugs for at least five years, although recent research suggests value to lengthening the therapy.

WebMD Health News Reviewed by Louise Chang, MD on October 02, 2006


SOURCES: 31st ESMO Congress, Istanbul, Turkey, Sept. 29-Oct. 6, 2006. Yvonne Wengström, PhD, head, nursing division, Karolinska Institute, Stockholm, Sweden. Adamos Adamou, MD, chairman, ESMO Developing Countries Task Force. Kathy Reymond, CancerWorld, Milan, Italy.
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