During its run, Sievers’s “My Cancer” was NPR’s most popular blog. Singer, his wife, remembers fellow infusion room patients telling Sievers, “I was feeling that very thing that very day you wrote it.” She recalls, “Leroy would say, ‘It’s almost a little scary for me. Should I be guiding these people through their journey with cancer?’ ” The “My Cancer” community grew so large and so loyal that Singer continued to write about cancer, her time as a caregiver, and grief, after Sievers died. The blog became NPR’s “Our Cancer” page in 2009 and will soon be hosted by Johns Hopkins cancer center, where Singer serves on an advisory panel.
New York Times “Well” blog editor Tara Parker-Pope, who published Jennings’s work, says the web has changed the nature of first-person health reporting, not only creating a daily storyline for readers to follow—not unlike a TV serial—but promoting interaction with the author and among readers in comment sections. A Jennings post about bad news is moving; it becomes intimate when you can offer an immediate note of consolation—and see it responded to just as quickly. And that can serve the storytelling. “What I love about the blog is that people take your story so much beyond the original story,” says Parker-Pope. Reader comments, Parker-Pope adds, can air the experiences of hundreds of readers as a print story never could.
On Sievers’s “My Cancer,” for instance, stories that emerged in the comments were brought into the blog. Stephanie Dornbrook, who kept her own cancer blog, “For Crying Out Loud,” was a regular commenter who earned a following among other “My Cancer” commenters and was featured in Koppel’s Living With Cancer project. Sievers included updates on her condition in his posts when her comments grew scarce, finally announcing her death in January 2008. Afterwards, Sievers posted a letter from Stephanie’s husband, Dustin Dornbrook. It read: “I know she cherished this blog site and all of you were loved by her. I am grateful to Leroy for making it available. It makes me happy so many of you will keep her alive through your memories.”
Despite the comfort the blogs have provided some, there are those who see potential concerns. “Personal stories and anecdotes are incredibly powerful,” says Dr. Andrew Holtz, an author and medical reporter formerly with CNN’s health unit. “The hazard is if the personal stories…are not representative of what the medical evidence says.” In regular medical reporting, anecdotes are chosen to accompany the evidence, or a new development, or the typical experience. These blogs, Holtz says, instead illustrate the old adage that “news is whatever happens to journalists.”
Holtz points to prostate cancer as a good example of where a personal blog might not reflect the medical evidence. New studies suggest that nearly all of the 200,000 cases of prostate cancer diagnosed in the United States each year are overtreated, with doctors mostly recommending the same radical prostatectomy that surgeons performed on Jennings.
A blog like Jennings’s in an outlet like the Times—showing a man who was seemingly saved by prostatectomy—could play against this latest evidence.
Jennings was aware of the concern: “I wanted to make it clear that anything said in the posts was simply based on my own experience—I didn’t want to come off as an expert except on my own case.” He grappled with how he was presenting his case after learning about the rash of supposedly unnecessary prostatectomies, asking if his ride “through the stations of the prostate cancer cross” had been “all a lie? A dark conspiracy of the global medical-industrial complex?”
I’m a wild card, the 1 man in 48 saved by surgery. Without it, my doctors wouldn’t have learned the cancer was so advanced, and wouldn’t have given me the hormones and radiation that helped keep me alive.
…But all of this raises one last stark question: Was my life worth the 47 other prostatectomies that probably didn’t have to be performed? I don’t know. I’m a man, not a statistic.”