Patient Perspective on Risk
Women's Perceptions about Recurrence and Desire for Information
PATIENT SURVEY
Purpose
The in-depth survey commissioned by the Society and administered by the Roper Organization was conducted between February 18th and March 28th, 2005 via telephone among a national sample of 300 post-menopausal women diagnosed with early breast cancer. The women met the following criteria:
- Had completed three or more years of adjuvant hormonal therapy (such as tamoxifen), and are still receiving that therapy, or
- Had completed five or more years of adjuvant hormonal therapy (such as tamoxifen) within the past two years.
To identify these respondents, Roper used a list of women pre-identified as having breast cancer based on a random sampling of households. This panel is balanced demographically to represent all households in the United States for a wide range of doctor-diagnosed health conditions, including breast cancer. A sample of women diagnosed by a health care professional as having breast cancer was drawn from this frame on a random basis and subsequently screened by telephone to identify those breast cancer patients who met one of the above eligibility criteria.
Due to the low incidence of eligibility, the sample of 300 also included 30 eligible women who were recruited by a national sample of oncologists. The women then voluntarily called Roper using an 800 number provided to them by their physician. This procedure maintained physician-patient confidentiality.
Of the total 300 completed telephone interviews, 177 were with women nearing completion of the therapy and 123 were women who completed therapy.
The sampling error for those currently on therapy is +/-7%. For those who completed the therapy, the margin of sampling error is +/-9%.
Considerations
This survey is subjective and based on the opinions of the patients who participated. This report interprets their results in the context of other published research.
Majority of patients look to the future
When asked, "As a woman who has been treated for breast cancer, how would you describe yourself now?" 71% of women with early breast cancer who completed adjuvant hormonal therapy (such as tamoxifen) and 72% of women who are currently receiving adjuvant hormonal therapy considered themselves a "breast cancer survivor." Only a minority, 34% and 24%, respectively, described themselves as "cancer free. 22"
Many patients try not to focus on their cancer after completing initial treatment
Approximately 77% of women with early breast cancer who completed adjuvant hormonal therapy and 79% of women now receiving adjuvant hormonal therapy indicated they "try not to think about cancer too much." 22
But this does not necessarily mean that these women do not worry about their cancer returning. In this survey, 50% of women with early breast cancer who completed adjuvant hormonal therapy and 57% of women who are currently receiving adjuvant hormonal therapy indicated that they "still worry about [their] cancer returning in the future." 22
Supporting this finding is data from at least one other unpublished study. 23 The study is based on a pilot survey of 72 Stage I, II or III breast cancer survivors where the length of time since participants had completed treatment for early breast cancer varied. However, the results indicate that a majority of the women continue to worry, to some degree, about their risk of breast cancer coming back.
Specifically, the women in the survey were asked: "Over the past seven days, how many days have you spent at least part of the day worried about getting breast cancer again?"
Of the women surveyed, 33% worried for three or more days per week about their breast cancer returning. 23
A significant number of women haven't discussed risk of recurrence with their health care professionals
According to the Roper survey, nearly one-quarter of women with early breast cancer who completed adjuvant hormonal therapy and 40% of the women who are still receiving adjuvant hormonal therapy say they have never discussed with their health care professional their risk of breast cancer coming back once [they] have completed five years of adjuvant hormonal therapy. 22
However, when asked how they might feel after finishing five years of adjuvant hormonal therapy, 95% of women who completed adjuvant hormonal therapy and 97% of women still receiving adjuvant hormonal therapy say they want to learn everything they can about preventing recurrence. 22
Also, 84% of women who completed adjuvant hormonal therapy and 87% of women who are still receiving adjuvant hormonal therapy believe that it is "critical" or "very important" that they do everything they can to reduce the risk of their breast cancer returning. 22
Majority of women do rely on their health care professionals to help them weigh the pros and cons of new treatment options
Of the women surveyed by Roper, 93% with early breast cancer who completed adjuvant hormonal therapy and 94% of those still receiving adjuvant hormonal therapy, say that they depend on their doctor to help them evaluate the pros and cons of new treatment options. 22
These survey results clearly demonstrate that women who have had early breast cancer are generally positive about their future but still worry about the chance that their cancer might come back. They recognize that they may be at ongoing risk for recurrence, rely heavily on health care professionals when making choices regarding treatment, but are not currently getting the information they need so that together with their health care professionals, they are to make informed decisions about prevention of breast cancer recurrence. Clearly, there are gaps and challenges in the communication process. These gaps must be understood and overcome. We explore the complexities of some of these issues in the next section.
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