Why do Cancer Patients Hide?

Photo: Kiran Foster, Creative Commons

Why do Cancer Patients Hide?

Last night I joined a group of cancer patients to hear a professor give an update on research on the cancer we share. I’ve been to many lectures and conferences on the topic. But one point caught me off guard: a recent survey in which two-thirds of the cancer patients admitted that they had hidden information about their side-effects from their doctors. The professor struggled to find the words: had they lied to their doctors? No, they hid from their doctors. Why? As the professor explained it, he talked about the maintenance chemotherapy that I take – an expensive treatment which extends remission, but brings a host of side effects. The patients were afraid that if they shared how they really felt on the drugs, their doctors would take them off. And their cancer would come back sooner.

This moment gives a glimpse into the strange world of cancer treatment. The presentation was filled with charts and statistics. But as the patients know all too well, there is something at stake that cannot be charted: fear. Harsh side effects may be the “trade off” for an extended life-span. As patients, when we trust our doctors enough to truly disclose our symptoms, we’re not just trusting their medical knowledge. We feel like we’re handing over a decision, a judgment over life and death, to someone else.

In the evening, I was praying Psalm 18, and was particularly struck by verse 29:

“You, O Lord, are my lamp; my God, you make my darkness bright.”

This prayer is astonishing. The Psalmist does not deny the darkness, but unequivocally confesses the Lord as the Light, the Lamp, the “shield for all who take refuge in him.” The Lord is a God of judgment, and that’s a good thing: for the Lord alone has full disclosure of our hidden places; and the Lord is trustworthy – a Lamp, a Light in dark places, a shield to the embattled who take refuge in him.

I wish that my fellow cancer patients had shared more forthrightly the symptoms of their chemo. But I can relate to their fear as they hid. I’m immensely grateful to cancer researchers. But they don’t always understand that for patients, the issue is not just about data. It’s about life and death. Some patients will hide even severe side effects from their doctors out of fear that the doctors would take them off what they see as their life-line.

In the end, I came away from the evening with the sense that exclusively “medical” categories are just not adequate for cancer patients and cancer treatment. We are not just looking for untainted data about the nature of cancer. We are mortal creatures, desperate enough to hide in the dark if it could help us in a life-and-death matter. Yet ultimately, there is just one who is trustworthy enough for needy creatures like ourselves: “You, O Lord, are my lamp; my God, you make my darkness bright.”