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

Last Editorial Review: 10/23/2003

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.

Visco: WebMD's and Dr. Susan Love's message boards are places where you can ask questions about your specific situation.

Member: Is there any difference between a clinical trial paid for by a drug company and one paid for by a government agency, such as NIH?

Visco: There are differences among clinical trials but the fact that a drug company supports one and NIH supports the other does not necessarily mean that one is better than the other. There are good, mediocre, and bad trials in both categories and our guide and the Coalition help you analyze specific trials.

Member: You said it is good to get a second opinion. What if the two doctors do not agree? How do I know who to listen to? Do I get a third opinion?

Visco: You certainly can get a third opinion. And you must educate yourself so you can analyze the recommendation that you are getting. For example, understanding your risk, the benefits of the different recommendations, the side effects, and the evidence behind the recommendations. These are the types of questions you need to ask in order to determine which recommendation to follow.

Member: What tests should you insist on before making treatment decisions?

Visco: There's no set of tests that apply to every person. Certainly everyone would have a pathology report or a biopsy report, X-rays, bone scans, various blood tests, and special tests. For example, HER2/neu is a test that you would need to determine your treatment.

Moderator: How can we advocate for breast cancer research in the political arena?

Visco: The National Breast Cancer Coalition sets an agenda every year. Our board of directors is comprised of organizations from across the country that represent different perspectives in breast cancer. And we come together to determine what the priority political questions are and then we educate our members and members of Congress on those priorities. We then mobilize the grassroots to demand action from Congress.

So as a member of the National Breast Cancer Coalition you would be trained in political advocacy and the priorities that we set. As a result of our work, the federal government has increased funding for breast cancer research more than eightfold over the past 10 years, and that includes more than $8 billion from the defense budget alone. But it's not just about more money -- remember, we educate our members to enable them to help guide how those funds are spent.

Moderator: What criteria do you apply? How do you decide where you think the research money should go?

Visco: Let me explain how the Department of Defense Breast Cancer Research Program works. The program is designed by a multi-disciplinary group of scientists and advocates. These are advocates who have been trained in the science. We look at where the gaps are in breast cancer research funding and we design mechanisms. We don't ask specific questions, we leave it to the worldwide scientific community to submit what questions they believe are important. Then those proposals undergo scientific review by advocates and scientists and the program balances the portfolio among the proposals that score well. So we are responding to the innovative ideas from scientists while filling gaps in our knowledge about breast cancer.

Member: What do you mean by mechanisms?

Visco: An example of mechanisms in the Department of Defense program is idea grants. We learned from the scientific community that they were unable to get funding for original ideas that did not have a great deal of data behind them. These are the ideas that lead, ultimately, to the large research proposals that could get funded. So we created an idea grant mechanism to fill that gap. There are mechanisms to support infrastructure personnel for clinical trials and to foster collaboration among different types of scientists. Those are just a few examples.

Member: And idea grants are just that -- grants for people to sit down and come up with new ideas?

Visco: No. You have to have an idea before you submit a proposal. There has to be scientific validity to the idea that you have and you want to test it further to see if there really is something there. Every advance of science and medicine starts with that kind of idea.

Member: Are you supporting grants to study the relationship between environmental toxins and breast cancer?

Visco: Absolutely. In fact, the Department of Defense program that we levy for specifically requests proposals in that area. In addition, one of the priorities of the National Breast Cancer Coalition is the environment and breast cancer research bill [Breast Cancer and Environmental Research Act of 2001]. We are trying to get Congress to enact this bill, which will give $10 million a year for five years to The National Institute of Environmental Health Sciences to fund collaborations among researchers and community groups around the country to look at this issue.

Member: What other proposals are being studied now?

Visco: One of the hot topics in the breast cancer research community is the search for targeted therapies for breast cancer. That is, understanding breast cancer at the molecular level so that we can determine which tumors will respond to which therapies. Now, as you know, we treat all women with breast cancer almost the same. Everyone gets chemotherapy, yet the majority of women do not respond to chemo. So they are looking at how genes behave in certain breast cancer cells in the hope that they will be able to develop different treatments targeted to different sub-types of breast cancer.

Member: Speaking of political, I'd like to hear how you respond when someone says breast cancer has become a pet disease and should not receive as much attention and funding as things that have a higher mortality rate among women, such as heart disease.

Visco: There are still 40,000 women who die each year of breast cancer. We don't know how to prevent the disease. We don't know how to detect it truly early. And we don't know how to cure it for any individual woman. This year alone, more than 200,000 women will be diagnosed with breast cancer. This is a serious health issue that must be addressed. That is not to say it is the only issue, but it is one that must be a national priority. We may have increased awareness about breast cancer, but we still don't have the answers.

Member: I just get so tired. I am trying to learn as much as I can about breast cancer, but I don't understand the medical terms. I feel as though I am making mistakes because I don't understand. I'm not a doctor. Everybody has ideas about what I should do. I'm just so tired from the chemo I can't think.

Visco: Sometimes we need to bring other people into our search for answers. It is important to have family or friends who will do research for you, who will get the information when you are too tired to do so yourself. Also, there are always support groups and local organizations that are available to help.

Member: I belonged to a small class of nursing students -- only 21 of us. Thus far six of us have had breast cancer. We realize this is above the national average. Therefore the idea of toxins worries us for others.

Visco: We really don't understand about cancer clusters. We don't have the tools needed to assess exposures. There's a great deal of work that has to be done. It's very difficult work, but the National Breast Cancer Coalition is pushing very hard to get Congress to fund the research and get the answers and we can use your help.

Member: What can we do to help?

Visco: You can join the National Breast Cancer Coalition and become an advocate.

Member: A patient advocate can be very, very welcome to a person who needs help. It can be a friend or relative.

Visco: The final comment I would want to make is that while we don't have the answers to breast cancer, we do have the power to get the answers. And it's women with the disease and other advocates for this disease who are going to get the answers. And we should not be afraid of becoming activists; we should embrace it. It's very true that it is the activism, it's acting, it's constantly pushing, that's going to end this disease. We can't sit back and wait for others to do it for us.

Member: How can we join the National Breast Cancer Coalition?

Visco: You can join the National Breast Cancer Coalition by calling the toll-free number, 1-800-622-2838.

Moderator: We are out of time. Thanks to Fran Visco for joining us today. To learn more about being a breast cancer advocate for yourself and others, be sure to explore all the breast cancer info here at WebMD, including our message boards and live chats.

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