60 Becoming a Patient
doctor with breast cancer that had metastasized to her spine, found that picking up and reading results herself could be an error. She obtained her pathology results herself, and wept.
I said to my internist,‘‘ I’ m really scared of going to the pathology department to get my slides. Can you get them?’’ He said,‘‘ Yes,’’ but he didn’ t do it. So I had to go to the pathology department myself. I had my slides in my hand, and saw that the inside was full of cancer. The surgeon said he had taken everything out. But all the perimeter was full of cancer.‘‘ Shit!’’ I tried to find him, but he was on vacation. I was absolutely climbing the walls! I was in the hospital, and went to the breast clinic, because I couldn’ t find any other doctors. I arrived there crying, totally hysterical.
Over time, others struggled, varying in how much they assessed or interpreted potentially devastating prognostic tests. Nancy, the endocrinologist with breast cancer metastases, shed light on the strains involved in maintaining these conflicting roles of both observer and observed, object and subject— and the discontinuities between these.
I had a very aggressive doctor who liked to follow CEA [ carcinoembryonic antigen ], a controversial tumor marker. She doesn’ t do scans. But there was a very hard period of about two and a half years when I was fine, but would come in every three months and get the CEA checked. It’ s literally going to tell you if you will live or die. I struggled with how to do this: I can go to my office and get on the computer and check it myself. At first, that’ s what I did. But then, it was just too weird and scary to be sitting there thinking,‘‘ Ok, I’ m going to check now....’’ Still, if I waited for my doctor to call me, I’ d have to sit by the phone, and I’ d get hysterical waiting. So finally, I figured out her office hours, and would check that morning. If it was bad, I would run to her office.
Thus, in myriad unanticipated ways, these doctors had to decide exactly how involved and aggressive to be in their own care. Self-doctoring included a range of behaviors, and the reasons to adopt or eschew these approaches varied. Fear and denial led some to avoid getting diagnosed or, once diagnosed, visiting a physician. Many factors contributed to degrees of self-doctoring— from lack of expertise about one’ s diagnosis, to psychological needs to maintain control of one’ s body and life. As we shall see, these tensions mirrored and anticipated others as well.