In 1999, when Christine Druther first began searching the Internet for information about HER2-positive breast cancer, it generally left her with little information and even less hope. “A common theme,” says Christine, “was ‘HER2 breast cancer is very aggressive and the prognosis is poor.’” Not great news, to say the least, if you’ve recently been told that your cancer is HER2-positive but you don’t know much else about what that means.
Originally diagnosed with breast cancer in 1990 (eight months after her mother had passed away from metastatic disease), Christine, a health educator, underwent a lumpectomy, chemotherapy, and radiation. She remained cancer-free for nine years. But in the summer of 1999, she felt an enlarged lymph node in her neck, which led to testing revealing that her breast cancer had returned. She was diagnosed at Stage IV with brain metastases. Though her pathology report did not indicate her HER2 status, Christine says, she insisted that her tumor be tested. The results were clear: Christine’s cancer was HER2-positive.
“I then turned to the Internet and searched for available information about the HER2/neu gene, metastatic breast cancer, CNS [central nervous system] tumors, and Herceptin® [trastuzumab],” says Christine. “But there was very little information available, and what was available was scattered throughout the Internet.” With the information that she was able to piece together, Christine created her treatment plan: “I was treated with Herceptin/Taxol® [paclitaxel] and had a dramatic positive result. All my symptoms disappeared within three days.” Because Herceptin does not cross the blood-brain barrier, however, Christine required further treatment for the brain metastases. She underwent Gamma Knife® radiation but subsequently required whole-brain radiation after six months, when a follow-up MRI showed that many tiny tumors and lesions remained. In the summer of 2001, Christine was delivered great news: there was no evidence of cancer remaining in her body; she had beaten the odds.
Armed with the information she had collected to educate herself and her family, and determined that other women diagnosed with HER2-positive cancer would not have as difficult a journey, Christine set out to create a comprehensive resource site for women diagnosed with HER2-positive breast cancer. “I felt that if I could do it, others could, too. As a professional health educator, I felt it was my moral obligation to help other women try to overcome this disease. I wanted to place all the information that I had gathered in one place so that all newly diagnosed HER2-positive patients need only come to my Web site for a comprehensive crash course in their cancer treatment.”
Christine’s dream became a reality on December 24, 2001, with the launch of www.her2support.org. The Web site, which Christine and her husband, Joe, manage from their home in California, offers current information about HER2, ranging from a general introduction to the topic (“What is HER2?”) to detailed information about metastases and the latest treatments. The site also includes a clinical trials list, resource and practitioner lists, and information specific to a HER2 diagnosis on topics ranging from nutrition to financial assistance. But, Christine says, the most popular feature of the site remains the message boards, which have created an incredibly valuable community for women diagnosed with HER2-positive breast cancer.
“Newly diagnosed women receive answers to their questions, and patients meet there daily to discuss their successes and share their failures,” Christine says. “Visitors feel comfortable on our Web site. Seasoned members go out of their way to make everyone feel at home. In many cases patients meet on our site, exchange e-mail addresses, then phone numbers, and soon develop lasting friendships.” The support they are able to provide each other is invaluable, as is clear in a browse through the postings on the site. Also clear, in viewing the message boards, is the gratitude that the members feel toward Christine and Joe for creating the site and for continuing to maintain the information.
“I have spent nearly 200 hours here,” one member writes, “learning more about breast cancer and treatment than ever before. Considering that I am an 11-year survivor, it is significant to me how much more I have learned from this board than from all the books on my shelf! In thinking about these things, I want to say a heartfelt thank you to everyone who contributes here—especially to Joe and Christine for providing such a wonderful place to connect and learn.”
For Christine to hear that she is accomplishing her goal of creating a place for women to become educated in the face of their diagnosis is truly the most rewarding aspect of her work. “The many e-mails and online comments made thanking me for providing inspiration through my story and for making the Web site available are the most powerful,” Christine says. “To know that through our efforts women are feeling more empowered and knowledgeable to the extent that they become partners in their treatment and advocates for other patients is truly rewarding.”
There is no doubt, however, that despite the advances that Christine feels she and others have been able to make, she is also aware that there is work left to do for HER2 survivors. “Our voice has been heard around the world, but there is a definite need for the Latino communities,” she says. To that end the site intends to launch a Spanish version in late 2008. In addition, Christine says, HER2Support.org will continue to work toward advancing research. “There are also some very important clinical trials scheduled to start within the next year. Our organization has always been an important resource for researchers to recruit candidates for these trials, and we will continue to do so. In one Phase I trial of a vaccine, 20 out of 40 candidates came from our Web site.”
As Christine looks to the future and continually seeks ways to empower the HER2 community, she is as hopeful as she is determined: “Dr. Eric Winer of the Dana-Farber Cancer Institute in 2006 predicted that within five years HER2-positive breast cancer will be a treatable condition,” she says. “We look forward to that day and to the opportunity to get on with our lives.”