OncoLog

 

From OncoLog, June 2013, Vol. 58, No. 6

House Call: Cancer Blogs Provide Insight from Patients
Bloggers offer information and inspiration to others affected by cancer

Cancer patients write blogs for many reasons—to inform, to inspire, or just to vent their emotions. The reasons for blogging and the topics vary widely, and each blogger has a unique story to tell.

Diaries and dialogues

One such blogger is Oliver Bogler, Ph.D., Senior Vice President for Academic Affairs at The University of Texas MD Anderson Cancer Center. Dr. Bogler is a biologist with years of experience in cancer research and a husband whose wife survived breast cancer several years ago. Last September, he was shocked to learn that he, too, had breast cancer. To chronicle his experience as a patient, he created Entering a World of Pink: A Male Breast Cancer Blog.

“I started writing a couple of weeks after my diagnosis, so it’s allowed me to keep a sort of diary and track the trajectory I’m on in my treatment,” Dr. Bogler said. “When I was younger I kept a diary, so I was aware that writing can be therapeutic.”

Some bloggers write to keep friends and family members updated about the status of their cancer treatment. It’s not unusual to see blog posts showing a patient’s lab results or treatment schedules. Services such as www.caringbridge.org and www.carepages.com allow patients to set up private blogs that can be viewed by invitation only. Patients or caregivers who lack the time or energy to contact people individually can use these blogs to stay in touch with loved ones.

Blogs can also be used to connect with cancer patients and survivors who have similar experiences. Blog Nation, a network of bloggers, has two directories of cancer blogs at www.blognation.com/directories. One of these directories is devoted to breast cancer, and the other includes blogs about other types of cancer. Another site, www.beingcancer.net, lists more than 1,500 cancer blogs. Such networks allow patients to find other patients’ blogs and to communicate in the blogs’ comment sections.

Many bloggers use Facebook and Twitter to find others with similar interests. “I’ve connected with other bloggers through a Twitter network called Breast Cancer Social Media, which meets online Mondays at 8 p.m. Central time,” Dr. Bogler said. The group—which includes bloggers, patient advocates, and physicians—communicates on Twitter by writing messages with the hash tag #BCSM. Recently, members of the group launched an independent Web site, www.bcsmcommunity.org.

Education and advocacy

“If you think you have a unique perspective to share, a blog is a good way to join the discussion,” Dr. Bogler said. His experience as a scientist and a patient enables him to describe cancer biology in terms that patients can relate to. For example, this spring Dr. Bogler learned that the cancer had spread to six of his lymph nodes. Dr. Bogler explained the significance of this finding in a blog post dated April 12:

That spread is what you need to worry about for long-term survival. The local disease is very effectively treated with surgery and radiation. The cells that have left tumor-town and are hiding out along the rivers and streams of the lymph and blood system and in the organ-countryside beyond are the ones that can threaten your life, if they acquire the ability to grow there. They are the reason we do systemic therapy: chemo and hormone suppression.

Dr. Bogler also wanted his blog to raise awareness about breast cancer in men. He said that the current lack of awareness among patients and physicians causes some men to be diagnosed at later stages, when the cancer is more difficult to treat or has spread to distant organs. To advance his goals of education and awareness, Dr. Bogler has added a video page to his blog.

Multimedia blogs

Video blogs are not uncommon, and most traditional blogging platforms allow bloggers to upload video clips. Some cancer patients skip writing altogether and blog on YouTube. For example, a patient named Eric McLean documented his 5-year struggle against leukemia on YouTube.

Traditional written blogs or YouTube channels can be started easily at no cost. In addition to the blog network sites listed above, Google and www.wordpress.com offer tools to set up blogs for any purpose.

Regardless of their format, blogs provide an outlet for their writers. And for readers affected by cancer, patient blogs may provide valuable insight and guidance.

— B. Tutt

For more information, call askMDAnderson at 877-632-6789. For blog posts by MD Anderson staff, faculty, patients, and caregivers, visit Cancerwise.

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