March 14, 2003: The Breastcancer.org Story


FOR IMMEDIATE RELEASE

March 14, 2003

Press Contact:

Pamela Green

Breastcancer.org

(610) 642-6550

pgreen@breastcancer.org


My mother was just diagnosed with breast cancer 3 days ago. She doesn't have access to a computer so I looked up breast cancer and yours was the first site I came to. I checked around at other sites for info to print off and send to her, but yours was by far the most informative and well put together. Everything is worded so that it's very easy for "regular" people to understand. I just wanted to say a huge and well deserved, THANK YOU!!!!!

Amy Rangon, Breastcancer.org visitor

This is the kind of e-mail that Breastcancer.org receives every day. Created by Dr. Marisa Weiss, 42, a practicing oncologist with more than 15 years' experience working with breast cancer patients, the 18-month-old web site helps people to make sense of the complex medical and personal information about breast cancer and to guide them to the best decisions for their lives.

"These kinds of e-mails let me know that the 24/7 schedule my staff and I have been keeping for the past two years is more than worth it," Dr. Weiss says. "Knowing that we are providing critical guidance to thousands of people a day as well as helping them deal with the emotional, physical, and psychological impact that breast cancer has on them is incredibly satisfying. The mission of Breastcancer.org is the inspiration and fulfillment of my life."

For in an internet environment in which numerous well-funded, big business health-related sites have crashed and burned, Breastcancer.org has been able to triple its traffic, grow its content, and increase its programming by responding nimbly to the emerging needs of breast cancer patients, their families, and others concerned with the disease.

The Breastcancer.org story is intertwined with the story of its founder. In 1989, Dr. Weiss, a newly minted radiation oncologist, had just joined a breast cancer practice at the University of Pennsylvania Medical Center, where the majority of patients were well beyond their original diagnosis and treatment. They were now dealing with a new trauma—how to get on with the rest of their lives.

"I realized that the whole point of finding breast cancer early and treating it effectively is to get back into life after treatment is over. I wanted to help women navigate through the ongoing medical and emotional issues and move on to recapture the pleasure and meaning of living," says Dr. Weiss. Always one to put her passions into action, in 1992 Dr. Weiss decided to start her own nonprofit organization, Living Beyond Breast Cancer® (LBBC). Its mission: to help women live as long as possible with the best quality of life after breast cancer treatment ends. She became LBBC president, founder, executive director, and gopher—all while balancing a clinical practice, a marriage to a pediatrician, and three young children (twin one-year olds and a three-year-old). She operated the organization from her home for its first five years, eventually moving LBBC out of her house and hiring a full-time staff. Today, LBBC raises and administers a $1 million annual budget and provides conferences, newsletters, outreach services, and a telephone helpline.

As reports of LBBC's conferences reached women and physicians beyond the Philadelphia area, the need for information about the management of life after breast cancer became a national focus for Dr Weiss. Frustrated by her geographical limitation, Dr Weiss decided to write a book: Living Beyond Breast Cancer, written with her mother, Ellen Weiss, which was published by Random House (1997, 1998). With 75,000 in circulation, it serves as an in-hand guide for when treatment ends and the rest of your life begins.

By the late 1990s, however, Dr. Weiss, now practicing in Philadelphia's Paoli Memorial Hospital/Jefferson Health System and Fox Chase Cancer Center Network, realized that the world of breast cancer—and medicine—was rapidly changing. There had been an explosion of research, and new treatment options were becoming available every day. Yet the amount of time doctors were spending with their patients was actually decreasing, and there were fewer opportunities for women to find out about these new treatments necessary for their lives.

Dr. Weiss could see that it can be next to impossible for a woman to get to a conference if she is working, has young children, or has limited resources. She also found that the responsibility for decision-making regarding treatment options was increasingly being shifted from the doctor to the patient, further complicating her already stressed out life. "Even the most highly educated ‘multi-taskers’ found themselves stuck, devoid of access to critical information about how to treat their own life-threatening disease," Dr. Weiss adds. "My patients were scared to death." Dr. Weiss found herself frustrated, asking herself, "What's the point of all of these new treatment advances if the women who need them can't get access to them?"

"Breast cancer decisions follow you everywhere, from day into night, from the bedroom to the boardroom: ‘Why should I take a treatment that damages my immune system?’ ‘Do I really need a full 6 months of chemotherapy or will the 4-month regimen be as effective?’ ‘Can I find a bathing suit that covers my scars, holds my breast prosthesis, and hides the weight gain from chemo?’ ‘What can I do about these terrible hot flashes, when hormones are considered unsafe?’ I found that women needed help and information 24 hours a day, seven days a week. I knew that the internet was the answer," she says.

In 1999, Dr. Weiss began creating a web site called ibreast.com, pouring her personal savings into it, tapping friends, patients, and colleagues to help with its development. The first site launched in October 1999, followed by a major launch on June 21, 2000, the summer solstice, with a live conference designed to ease the fears women have about breast cancer that keep them awake even on the shortest night of the year.

"The fear of breast cancer is like a whale that parks in your living room for good," Dr. Weiss says. "It gets bigger, it gets smaller, but it never goes away." Dr. Weiss was determined that the web site would provide a special place for women to go, any time of day or night, from anywhere in the world, to "shrink that whale and keep that whale small—smaller than a magazine rack," she adds. The mission of ibreast.com was born—to provide information, hope, and support to millions of women around the world.

Today, with over 500 hundred pages of original peer-reviewed medical content and illustrations on every aspect of breast cancer—from diagnosis to treatment to the challenges of life after breast cancer—the site offers a depth of information in a down-to-earth style unavailable on any other health-related web site. Most importantly, all content, including illustrations, is provided in a comfortable, sensitive, and respectful manner, designed to inform, not to intimidate. And, perhaps best of all—it's available 24 hours a day, seven days a week. "That's particularly important to many a woman, who finds the only time she has to research her disease may be at night, when the rest of the household is asleep, and she is lying awake, worried and fearful," Dr. Weiss notes. "Many women tell me that the advantage of using a web site is that they can seek out this sensitive information in the privacy of their homes."

Thank you so much for allowing all of us out in the real world into your medical world and hopefully understand this disease better.

—Alice

In November 2000, Dr. Weiss decided to reposition the site—moving it from the dot-com to the dot-org world. She relaunched the site with a new name and a new look. With a warm and vibrant appearance, ibreast.com became ibreast.org, to better reflect the site's mission and values, and move it away from the commercialism inherent in the dot-com arena. Shortly thereafter, an ibreast.org Professional Advisory Board member, Richy Glassberg, C.E.O. of New York's Phase2Media, gave Dr. Weiss what she felt was a daunting challenge: to procure the domain name Breastcancer.org for the site, a name that most effectively says what the web site is, and the internet address that is the most intuitive and credible for people seeking information on breast cancer through the web.

True to her mission, Dr. Weiss contacted Dr. Norman Berk, president of The Breast Cancer Research Foundation of Alabama (BCRF), who owned the rights to the domain name. After discovering how important the domain name was to their shared mission, the BCRF generously assigned Dr. Weiss the rights to use the name, and in May 2001, Breastcancer.org was born again.

Thank you so much! I wish I had known of this site a month ago when I was diagnosed with breast cancer. This is a wonderful site. Thank you.

—KL

As she built the site, Dr. Weiss invited the most well-respected researchers, physicians, and other health care professionals in the breast cancer world to serve on its Professional Advisory Board, including Larry Norton, M.D., then president-elect of the American Society of Clinical Oncology and head of the Division of Solid Tumor Oncology at Memorial Sloan-Kettering Cancer Center. "This remarkable site offers women with or worried about breast cancer accurate information plus kind, wise, and sensitive support, while at the same time delving into brave new areas like coping, sexuality, and fear," said Dr. Norton.

Each month, a guest expert along with Dr. Weiss, leads a live Ask-the-Expert Online Conference. Topics run the gamut from recapturing intimacy and sexuality, to coping with fatigue and fear, to understanding research breakthroughs. Another key feature is the monthly Research News, where important news from clinical and laboratory research is carefully selected, reviewed, and interpreted, and each study's "take-home" message reported. Timely coverage of special topics is another of the site's high priorities, such as dealing with summertime bathing suit body image issues and understanding how to deduct medical expenses on tax returns.

To stay connected and responsive to the emerging needs of site visitors, Dr. Weiss and other members of the Professional Advisory Board also personally respond to dozens of e-mail questions each month. In the next months, site users' questions and answers will be collected and dispensed weekly within a new section of the site, "Information Pharmacy." This section will allow all visitors to share the Professional Advisory Board's medical, personal, and practical knowledge.

The site will also launch a bulletin board system to enhance women's ability to connect with each other, substantially augment its content, enhance its interactivity, and continue to build collaborations with other breast cancer organizations and web sites.

As the second summer solstice approaches since the original site was launched, Breastcancer.org will undertake its first full-fledged fund-raising campaign with its shift to nonprofit status. "I guess I didn't expect I'd be launching a second nonprofit organization in my lifetime," Dr. Weiss says wistfully. "But I am very lucky. I am now clear about the purpose and mission of my life: to help women get through the overwhelming decisions they have to make and get back to a life they find enjoyable, meaningful, and spontaneous," she concludes.

* * * * *

Breastcancer.org accepts contributions at: 7 East Lancaster Avenue, 3rd Floor, Ardmore, PA 19003

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