Cancer Patients Support Each Other Through Facebook Community

Esophageal cancer patients interact on Mayo Clinic Facebook group

/ Author:  / Reviewed by: Joseph V. Madia, MD

(RxWiki News) Talking to a doctor about cancer, its treatment and aftermath offers a detached point of view because the physician usually doesn't have first-hand knowledge. But interacting with fellow patients can be enormously helpful and supportive.

Herbert Wolfsen, M.D. and other gastroenterologists at Mayo Clinic Florida use a private Facebook group to keep in touch with their esophageal cancer patients. This interactive community has been so successful that Dr. Wolfsen will discuss it at the annual American College of Gastroenterology meeting.

"Use social media to get support from other patients."

dailyRx spoke to Dr. Wolfsen, whose daughter Christianne actually started the Facebook group several years ago.

He explains his patients are unique in that "they are dealing with the diagnosis of cancer and the uncertainty that goes along with it and the various treatments for this disease."

Treating esophageal cancer may include endoscopic therapy, in which a scope is used to treat lesions.  Surgery is also used to remove all or part of the esophagus (the food pipe) and the top stomach.

Side effects from these treatments can be quite traumatic for patients and their caregivers and include everything from breathing, eating and swallowing problems, reflux, nausea and sweating to diarrhea and chronic and severe coughs, according to Dr. Wolfsen.

"Caregivers want to know what to expect - what their loved one can eat, where and how they can most comfortably sleep, what activities they can partake in - things like that," Dr. Wolfsen says.

The Facebook group offers answers and hope. "It's informal and experiential," Dr. Wolfsen said. "People will write what it was like for me and my partner; how the disease affects other people - my family, friends and people at work."

Patients are able to ask questions about the side effects "many have grappled with and share strategies for dealing with these problems."

Dr. Wolfsen tells dailyRx, "I think this community is really important for patients - especially newly diagnosed patients. As physicians, we can cover the medical and technical information. Then the group can fill in and discuss the social, lifestyle and nutritional aspects."

The Facebook group is private and can be accessed only by Mayo Clinic invitation. Patients who are diagnosed with Barrett's dysplasia or esophageal cancer are invited to join. Doctors don't provide medical information on the site, but can communicate with patients.

The group is run with the help of Mayo Clinic volunteer and patient advocate, Mary Helen Duggar.

The Mayo Clinic is one of the leading medical institutions to utilize social media. It's a popular YouTube destination, has a very active Facebook community and more than 200,000 Twitter followers.

Reviewed by: 
Review Date: 
November 3, 2011
Last Updated:
November 3, 2011