According to the American Cancer Society, about 12,500,000 people in the US have some form of cancer. That means approximately one out of every 25 Americans face the disease. Combined with family members of people with cancer, a vast number of Americans are affected by it.
That helps to explain why Mailet Lopez, a 39-year-old breast cancer survivor, who lives on Long Island and runs a digital media firm in New York City, launched the website I Had Cancer (www.ihadcancer.org) in 2010. The site functions as a support group and resource center for people and their families afflicted with the illness.
But what exactly does it offer?
Lopez, who resides in Rockville Centre about 25 miles from Manhattan, told the New York Daily News that for cancer patients, “Making connections are a lifesaver.” When the site launched, she envisioned it as a niche site that operated like Facebook to bring people together. By using it, cancer patients and family members could keep each other informed, share remedies, and fortify themselves through the support of others.
Though the site targets a wide expanse of cancer patients, researchers, medical professionals, and family, to use it fully readers are asked to log on and subscribe. There’s no fee. Users who are reluctant to enroll can still investigate it and read some articles but won’t be able to engage fully. They would not be able to write questions or read all the responses without being an enrolled participant.
The organization of the site reveals its goals. Sections include: Community, Discussions, Dear Cancer, H3, and Profile. I Had Cancer thrives as an Internet community. It’s like Starbucks, where people go to chat, work, and confer, but here all the conversation centers on one topic--cancer. In the community section, for example, readers fill in their basic information, such as when they contracted cancer, the specific type they contracted, where they live, their age, and their gender.
In the Discussion area there’s an ongoing conversation, going on 24/7, about what’s on the mind of its audience. For example, Daniel wanted to know whether anyone could recommend a speedy hair growth shampoo. Butterfly asked whether anyone has had surgery or radiation for sinus cancer and wanted to elicit what the effects and results were.
While many websites have interactive sections that encourage readers to engage in dialogue, few have the emotional intensity of I Had Cancer. Readers are looking for assistance--what worked, what didn’t work, what were the obstacles, what were the issues with the medications and treatment? It’s a site where people talk to and with each other, and where no one talks down to anyone else.
Researchers also tap the site to interview people. For instance, a University of Chicago researcher working on a grant asked for people to interview for feedback on a new medication.
Many subscribers use it as a therapeutic release and as a way to engage others. One survivor wrote “I’m still here and I win” as an exhortation to everyone on the site--and the world--that she’s still going strong and isn’t deterred. She’s alive, well, and delighted to be bouncing back. Another reader wrote, “You tried to knock me down, but you didn’t stand a chance.” She attributed her survival to the support provided by her husband and children. “Nothing can stop me now” is often the subtext of survivors who are in remission (though cancer specialists will say one is never cured of cancer but in recovery).
In fact, Lopez has noted that the “Dear Cancer” section, where survivors discuss how they’ve faced the disease, overcome it, and dealt with its pain and tribulations, has been the site’s most popular section. Here, readers personify cancer and talk to it, as if it were a friend, or an enemy who was out to get them, or something that needed to be overcome.
The H3 blog discusses recent research, books, cures, medications, and personal stories of dealing with the disease. Unlike Web MD (www.webmd.com) and Everyday Health (www.everydayhealth.com), the discussion on I Have Cancer stems from the everyday people who are contending with the illness and not the medical professionals who research it.
On H3, users can access the infographic “Ovarian Cancer: A Visual Guide” to see if it’s helpful. Other entries cover “Life after cervical cancer” and “Becoming a caretaker,” both of which could also be useful for friends and family members as well as patients.
There’s a special section called Cancer Support where readers log in and participate in online forums. Readers connect with fellow patients who are facing the same illness and live within proximity to form support groups in person, thereby going beyond the Internet.
In her mission statement, Lopez proclaims that every 23 seconds a new person is diagnosed with cancer. I Had Cancer targets every one of them, their loved ones and friends, and anyone else connected to them. “It’s the power of sharing information in a safe environment,” Lopez has said.
Gary M. Stern is a freelance writer based in New York City.