The Importance of Connecting With Other Patients Online

December 4, 2014
Randy Hillard, MD

Dr. Randy Hillard is a Professor of Psychiatry at Michigan State University and was diagnosed with metastatic gastric adenocarcinoma in 2010. He is one of the administrators for the Stomach Cancer Warriors and Caregivers Family support group on Facebook.

I joined the Stomach Cancer Warriors and Caregivers Family Facebook group in January 2012 because I felt pretty sure that I was relapsing into my Stage IV metastatic gastric adenocarcinoma, which had been diagnosed in December 2010. I suppose that I had “scanxiety.” I had been getting CT scans every three months. Since the last one, I had been feeling “twinges” in my abdomen. I did not want to share my fears with my oncologist because (I know that this will sound ridiculous and somewhat pathetic) I am a man, and a physician, and I did not want to show signs of “weakness.” I could not even talk with my wife because I knew she loves me so much that she would have become even more upset than I was.

The online group was warmly welcoming. Everyone there had suffered from scanxiety, as well as from stomach cancer. No one judged my “weakness.” Over time, I have developed deep attachments to other members of the group. I have genuinely been delighted in their good news and been devastated by their bad news. There was one lady in her 20s whose death touched me more than the deaths of any of the friends who I have lost in “real life.” There was another young mother, and I deeply wished that if only she or I could survive, that it would be her.      

Stomach cancer kills nearly a million people a year worldwide, but it is relatively uncommon in the United States. Its prevalence is decreasing year by year, probably due to improved public health. It is associated with infection with the bacteria Helicobacter pylori, whose prevalence has declined at the same rate as the prevalence of stomach cancer.                

When I joined the Facebook group, it had about 50 members; now it has nearly 1,500 from all over the world. Fifteen hundred—there are very few oncologists in the United States who have seen one-tenth that many stomach cancer patients in their entire careers. (My doctor, who is at a National Cancer Institute-designated cancer center, and who I idolize, sees only about one case a year.) 

In addition to providing support, we group members provide each other with concrete advice on topics such as nutrition and managing side effects.   We also share details about our treatment (e.g. “seven rounds of EOX plus 30 Grays of abdominal radiation, fractionated over five weeks”). We share news about new science and new treatments under development. We suggest questions that our fellow warriors should ask their doctors. Sometimes members suggest treatments that doctors may not have thought about, such as helicobacter eradication after partial gastrectomy and in first-degree relatives of patients.

Sometimes we talk about things that we are “Mad as Hell” about. Why are we told to eat multiple small meals a day after a gastrectomy, but have the hospital dietary department tell us that they cannot serve food that way? Why is there about $1,400 in federal research funding per death for stomach cancer and $14,000 per death for breast cancer? We also share plans on how to change these things that we are Mad as Hell about.

My main contribution, as a doctor and as a patient, is to keep reminding everyone that they have the right to have all of their questions answered by their doctors and that if their doctors resent being asked lots of questions, then it is time to find a new doctor.

Where do you find support? Share your thoughts in the comments section below or on Twitter.


Share your thoughts on this blog post on Cancer.Net's Facebook and Twitter.