Women diagnosed with metastatic breast cancer need different information than women diagnosed with early-stage disease. The study reviewed here found that women diagnosed with metastatic breast cancer aren't happy with either the amount or the quality of information available on metastatic disease. Other studies have found similar results.
The researchers asked 950 women from around the world who had been diagnosed with metastatic disease about the availability, quality, and usefulness of information on metastatic breast cancer. About 75% of the women said they had looked for information about metastatic disease.
Most of the women said they couldn't find enough useful information:
Despite the need for more and better metastatic breast cancer information, most of the women were pleased with the emotional support they got from their doctors and nurses.
Compared to metastatic breast cancer, there is much information and public attention on early-stage breast cancer. This is probably because most women diagnosed with breast cancer are diagnosed with early-stage disease. The prognosis of the disease also may contribute to the difference in information. Early-stage breast cancer is considered both treatable and curable. Metastatic breast cancer is treatable, but usually is considered incurable. Still, many, many women live productively and happily while being effectively treated for metastatic breast cancer -- more than 65% of the women in this study said they were enjoying their lives.
No matter what your breast cancer diagnosis is, you deserve the best information available to help you make decisions that are right for your unique situation. Your team at Breastcancer.org works very hard to make sure that all people diagnosed with breast cancer -- at any stage -- have the most accurate, up-to-date, and useful information they need to understand their situations and make the best decisions for their lives.
ST. GALLEN, Switzerland, March 13 (MedPage Today) -- Women living with metastatic breast cancer are dissatisfied with the amount and quality of information available to them about their disease, according to a Harris Interactive survey released here.
Although three out of four respondents said they had attempted to research their condition, 51% said the available information was insufficient or ineffective, said Musa Mayer, M.S., founder of the advocacy group AdvancedBC.org and a member of the steering committee for the survey.
"Women with metastatic breast cancer are a neglected community," Mayer said at the International Conference on Primary Therapy of Early Breast Cancer. "By that I don't mean they receive inferior medical care, but their psychosocial and informational needs are often not very well met."
The survey, which polled 950 women in nine countries -- Argentina, Belgium, Egypt, France, Mexico, Poland, Spain, the U.K., and the U.S. -- found the following medical information needs:
Respondents also noted a lack of information on support services available in the community (68%), how to pay for care (66%), hospice and end-of-life concerns (64%), medical coverage (64%), and how to talk to people about their disease (63%).
Overall, however, survey respondents were pleased with their relationships with their healthcare providers -- 83% gave oncologists good marks for the emotional support they provide. And 78% said nurses were supportive.
Mayer said information "really helps women cope with their disease." She noted that the survey found that the use of the Internet for research is more widespread than had been thought, even in developing countries.
"If quality information is available in native languages, the Internet would be one inexpensive way of delivering that around the world to these patients and their families," she said.
The study also found that about 44% of women said they were afraid to talk openly about their disease -- a sign that a diagnosis of metastatic breast cancer may be stigmatizing, Mayer said.
Just over half of the respondents felt their disease receives too little public attention.
"Most media attention focuses on women newly diagnosed who have early stage breast cancer," said Ruth Oratz, M.D., of New York University, who was also involved in the survey. "Of course, that's the largest population, but we don't want to forget about the subset of women who are living with metastatic disease."
Worldwide, there are about 1.3 million new cases of breast cancer annually. In developing countries, the majority of women are diagnosed with advanced stage or metastatic disease.
In the U.S., there are about 180,000 new cases of breast cancer each year, with about 6% (11,000 cases) being metastatic disease.
Mayer noted that women with slow-growing, hormone sensitive tumors can survive for five to 10 years, although the average survival time is two to three years. The survey found that 66% of women are still able to enjoy their life with the disease.
"To many, a diagnosis of metastatic breast cancer is equated with death," Musa said. "People don't understand that patients live with disease often for many years, so the quality of their lives is a really critical thing."
Members of the survey's steering committee hope that the survey results will improve collaboration among metastatic breast cancer stakeholders, which includes more than 600 advocacy organizations.
They would like to see more easily accessible, quality information on the disease, as well as education programs that promote public awareness.
The survey was funded by Pfizer.
Primary source: International Conference on Primary Therapy of Early Breast Cancer Source reference: "BRIDGE Survey: Bridging gaps, expanding outreach -- Metastatic breast cancer patient survey" Intl Conf Primary Therapy Early Breast Cancer 2009.
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