Cancer Blogs: A New Way for Patients to Communicate

NCI Listens and Learns Another Way to Communicate with NCI NCI and the Director's Consumer Liaison Group have launched a pilot project called NCI Listens and Learns, an online forum that offers cancer advocacy groups and members of the public the chance to publicly communicate with NCI on key topics. Those who would like to participate in the discussion can go to http://ncilistens. cancer.gov/. Watch for Bulletin announcements of new discussion topics which will be posted on the site at the beginning of each month.

June 4, 2005. The good, the bad, and the wonderful. The day after returning from our wonderful weekend in Grand Rapids, Michigan, I was feeling rather painfully bloated, but nonetheless decided that we would go as scheduled to a dear friend's house for dinner. We enjoyed a wonderful evening of gourmet food, fine wine, and lots of fun, but on returning home, I could sense that I was in trouble…As a result I spent all of Wednesday in the ER getting poked and scanned.

This day in the life of a cancer patient was written by NCI researcher Dr. Anita Roberts in her blog (short for "Web log"), an online tool she adopted after being diagnosed with gastric cancer in March 2004. Like other cancer patients and survivors, Dr. Roberts uses her blog (at http://www.anitaroberts.net) to communicate "how I'm doing, and what I'm thinking and feeling as I work through this difficult, and at times surreal, transition in my life."

Blogs provide the people who write them (also known as "bloggers") with a platform for sharing their thoughts and experiences with others. Dr. Bradford W. Hesse, acting chief of NCI's Health Communication and Informatics Research Branch, notes that 7 percent of Web users in the United States say they have created blogs. "Although we don't have any data on how many cancer patients or their caretakers are beginning to use blogs, we imagine that the number will begin growing as more Americans get used to blogging as a ubiquitous online activity," he says.

As a platform for online chronicling, many still consider blogs to be unfamiliar territory. Prior to her diagnosis, Dr. Roberts says she would never have considered becoming a blogger. "I was extremely reluctant to do it in the beginning," she recalls. "I have my private life and I don't always feel like sharing it." However, Dr. Roberts, a world-renowned scientist who was chief of NCI's Laboratory of Cell Regulation and Carcinogenesis until last August, quickly became overwhelmed by the outpouring of e-mails and phone calls once news of her illness became known. Her son urged her to start a blog to keep her friends and colleagues informed of her journey with cancer.

"Gradually, I got more comfortable with it," she says. "It became very much of a therapeutic tool for me." Dr. Roberts finds it especially helpful in focusing her thoughts on what upsets her about her situation, such as the side effects of her chemotherapy drugs. An entry from May 2004 begins: "Tonight is time for catharsis - why I hate Xeloda!"

Dr. Keith Bellizzi, a cancer prevention fellow working in NCI's Office of Cancer Survivorship, recently began a cancer blog "as a forum to track and discuss late-health effects of cancer treatment that I had 10 years ago." He notes that another benefit of blogging is that it creates a record of a patient's experience. "Reflecting back on your experience via journal entries can be quite therapeutic in seeing how far one has come."

The therapy comes not only from introspection, but also from reaching out to other people and helping them deal with cancer, whether it be their own or that of a loved one. "It's connected me to cancer patients who write to me and say, 'I found your site and have been reading it and it's been helping me,'" Dr. Roberts explains. "That has really been good for me."