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Breast-Cancer Hope: Seeking Truths - Not Spin - on the Web

September 15, 2005 By:
Rita Charleston, JE Feature
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Karen Brandow found breastcancer.org shortly after she received the devastating diagnosis last year. "It was a terrible time in my life," says the Havertown resident, "both for me and everyone around me. When a doctor tells you that you have breast cancer, it's a frightening diagnosis. "I'm married and have a son, 24, and a daughter, 16. You try to find the strength within yourself to go on and do what has to be done, which I did. But I also had a terrific support system so I was very lucky. My family was great. My relatives were there for me, bringing me chicken soup and meals."

But one thing that they could not bring her was enough medical information on how to deal with the disease, and that was something she desperately needed. So Brandow decided to do some research on her own by searching the Web. She says she found breastcancer.org by accident … perhaps one of the luckiest accidents in her life.

"I'm the kind of person who needs as much information as I can get. When you have to go to the doctor's office, there's only a limited amount of time they can spend with you, so often they only have time to give you the basics," she explains. "But I wanted more. I needed more. And I got it."

According to Marisa Weiss, M.D., who founded the Web site in 1999, it is a clearinghouse for responsible, accurate medical information and visual images about breast cancer. The nonprofit organization provides a safe, respectful and welcoming place where women and their loved ones can go, 24-hours a day, seven days a week, to make sense of the complex, medical and personal information about breast cancer.

Additionally, a professional advisory board of more than 50 doctors, nurses and researchers reviews all site content.

"I saw an enormous need to provide up-to-date information for women who were frightened, feeling threatened, overwhelmed, scared and confused, and yet scrambling to get answers to all their questions," says Weiss, an oncologist specializing in breast cancer at Lankenau Hospital.

Each month, the doctor continues, more than 500,000 people visit the site to access some 2,000 pages of original, peer-reviewed medical content and illustrations on every aspect of breast cancer, including timely information on symptoms, diagnosis and treatments; research updates and medical advances; a worldwide, online community of support including chat rooms and discussion boards (offering educational and medical information); access to patient advocates willing to share their stories and more.

People accessing the Web site come from all social classes, levels of education and parts of the world. Brandow says you can talk to people in your family, "but until you talk to somebody who's experienced what you're experiencing, it's just not the same thing.

"When you talk to others who are in your shoes, the information flows. You can discuss all kinds of things, like the results of being on chemotherapy or taking certain medications.

"People would tell me to take ice so that I wouldn't get mouth sores. Doctors don't have the time to tell you all that, but on breastcancer.org, people are willing to share their information, share their support. And no matter where we're from, we have learned to count on each other."

And that's exactly the point, says Weiss, who was recently named "Best Doc" in Philadelphia magazine. The article also highlighted the humorous video she created called "Doctor, Doctor," which is meant to help women make the most of their doctor-patient relationships.

Weiss says she went into this field because she's always been interested in women's health: "There have been so many advances that I found this a fascinating field to be in. Also, breast cancer is the most common cancer to affect women, but today, women also have the opportunity to live a long time after their diagnosis.

"So my work has given me an opportunity to do something innovative, creative, resourceful and scientific - in addition to saving lives."

 

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