Give Us More and Better Information Say Women Diagnosed With Metastatic Disease

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Women diagnosed with metastatic breast cancer need different information than women diagnosed with early-stage disease. A study 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:

  • More than 70% of the women wanted more and better medical information on metastatic breast cancer, including information on specific treatment options and their side effects.
  • More than 60% of the women wanted more and better support information, including information on insurance coverage, community assistance services, end-of-life issues, and how to talk to others about the disease.
  • More than 40% of the women said they were afraid to talk openly about their diagnosis.
  • More than 50% of the women said metastatic breast cancer doesn't get enough public attention.

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.

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