Taking Control of Breast Cancer: Self-Advocacy 101 -- Fran Visco

By Frances Visco
WebMD Live Events Transcript

Being an educated health consumer is the best way to become an advocate for yourself and others. We discussed sources of info about breast cancer, reading your pathology report, understanding lab results, and more with Fran Visco, president of the National Breast Cancer Coalition.

The opinions expressed in this transcript are those of the guest and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

Moderator: Welcome to WebMD University, Fran. Please tell us a bit about the National Breast Cancer Coalition.

Visco: The National Breast Cancer Coalition is made up of 600 organizations and tens of thousands of individuals across the country that have come together to end breast cancer through action and advocacy. Our goals are to increase the federal funding available for quality research and have a say in how those dollars are spent to ensure access to quality care for all women and their families, and to make certain that women with breast cancer influence all decisions made about the disease.

Moderator: What do you see as the key to being a good advocate for yourself as a breast cancer patient?

Visco: Individuals must educate themselves about breast cancer. Not just what is in the headlines but they must understand the evidence behind medical recommendations, and they should do their research, reach out to other individuals who have had breast cancer, and make informed decisions.

One of the programs of the National Breast Cancer Coalition is Project LEAD (Leadership, Education, and Advocacy Development) where we educate women and men to understand the science of breast cancer. And we also have other programs that give individuals the tools they need to help them make the right decisions.

Member: How do we find out about these programs?

Visco: Information about our programs is available on our website, which is StopBreastCancer.org or at our toll-free number 1-800-622-2838.

Moderator: It is important to understand as much as possible about breast cancer. Yet, when you are told you have it, it must be mind-numbing at first. How do you recommend someone begin her search for breast cancer information? What should be a starting point?

Visco: I was diagnosed with breast cancer in 1987 and I knew nothing about the disease. I began my research by, at that time, going to the library. Today I would be on the Internet and reaching out to breast cancer organizations in my community. Today I would do the same thing and I would go to the National Breast Cancer Coalition to begin my search for information. There is time to do the research after your diagnosis and there is a great deal of information out there.

The National Breast Cancer Coalition also just released a guide to quality breast cancer care, which is a free resource that gives you basic information about breast cancer. It doesn't tell you what to do, but it does give you the tools so that you can ask the right questions.

Member: Where can we get the guide?

Visco: You can call 1-866-624-5307. That's a toll-free number.

Moderator: You can get the latest on breast cancer from WebMD in our Breast Cancer Condition Center. Also visit the message boards and chat rooms to talk with others who are dealing with breast cancer.

Moderator: What information should you get from your doctor about your breast cancer?

Visco: You should:

  • Get a copy of your pathology report.
  • Know what the different treatments are for your disease.
  • Know what the evidence is behind those treatments.
  • Know what clinical trials are available to you.

Your doctor should, of course, answer every question you pose and should encourage you to get another opinion at a different institution.

Member: What information is on a pathology report?

Visco: It's a description of the characteristics of your disease. It tells you what type of breast cancer you have and it determines what treatment is appropriate for your breast cancer.

Member: I wouldn't know what my pathology report means. I'm not a doctor.

Visco: Information that you would get in our guide would help you analyze your pathology report. And there are other resources that will help you do so. In addition, Dr. Susan Love's Breast Book has information on how to read your pathology report. And the Why Me Breast Cancer Organization has a brochure on the same thing. Their number is 1-800-221-2141.

Member: Are there places, like breast cancer advocacy offices, where someone could take their pathology report and have someone go over it with them in terms that make sense? So many docs are busy or talk medical jargon; it's intimidating to ask for help.




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