My new patient and his wife have entered the “cancer world,” a place where nothing is familiar. He clutches a self-help book but mostly sits in stunned silence.
“We never even thought about cancer before!” his wife tells me. “Never! We knew nothing about it until last week when the doctor gave him the diagnosis!” She pauses and looks protectively at her husband. “We have been reading nonstop ever since then. It is all so overwhelming!”
She has a pile of internet downloads and a notepad crammed with carefully numbered questions. Why did this happen? Shouldn’t the cancer have been discovered sooner? Are the kids at risk? These two internet sites have completely opposite recommendations! What about lasers and robots? What clinical trials are available? What tests can be performed today? Can he have treatment closer to our home? Our daughter is getting married in three months! The side effects described on this site are terrifying! Can we start treatment tomorrow?
Initial office visits were very different when I first started caring for cancer patients in the 1980’s. In those days, people often arrived with no information and, sometimes, had not even been told they had cancer. Most people could, however, recall a family story about a distant relative who had suffered through treatment years before. “She developed a terrible burn and then died,” they would recall. “There is no way I will take any radiation!” Thanks to the internet, my task has shifted from providing very basic information to sorting out the competing information already encountered.
Cancer survivorship has also changed. Twenty years ago, survivors often felt completely alone, lamenting that they had no one with whom to share their concerns. Back in those days, a regular group of my patients met weekly just to talk. The group disbanded as survivors turned increasingly to the internet. Social media allow a 24/7 connection to survivorship sites, blogs, discussion boards, reflective writing and even survivor-created artwork.
What has not changed? The statement, “You have cancer,” still brings pain and fear. The reassurance, “You no longer have cancer,” can sometimes bring doubt and uncertainty. Patients are overwhelmed by the diagnosis, the well-meaning advice, the tests, the treatments, the appointments and the information overload.
Not long ago, I realized that I see about four times as many people for follow-up visits as I do for initial visits. In other words, I see many more people who have been cured of cancer than I see people who have cancer. For every patient who needs a plan of cancer care, four will need a recheck and encouragement. For every patient needing teaching about what is to happen next, four will need reassurance the things they are experiencing are common for other survivors as well. For every patient scheduled for surgery, I will try to help at least four leave behind their fears.
My new, anxious, overwhelmed patient will complete his cancer treatment in several weeks. He and his wife will struggle through the ordeal and, once the treatment is complete, they will enter the “survivor world,” full of its own mysteries and overwhelming experiences. Our “Cancer Center” will become, for them, a “Survivor Center.” It will be a good place for us to meet once again.
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This post is reprinted from the Froedtert & Medical College of Wisconsin 2011 Clinical Cancer Center Special Report.
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