Some observations by Susan Gubar on the emotions and decision making around cancer trials. Quote:
The authors of the consent form do not mince words, though they sometimes translate words not really in need of translation: “There is no guarantee that you will get any benefit (good things) from being in this study. The study drug is not a cure for your cancer.” In a transparent attempt to forestall litigation, the consent form departs from cheery rhetoric to address the incurable: “You have been selected to participate in this study in part because there is no known standard treatment for your cancer.” Phase 1 trials do not offer cures to participants, though they do offer potential cures for future patients.
By means of an amiable division of labor, my husband and I cope with the schizophrenic dilemma of wishing for the nightmare of a recurrence. He hopes that I will get into the trial so I will receive a drug that might prolong my life; I cannot stop myself from hoping that the cancer has not markedly progressed in my abdomen. Dr. Matei says in an e-mail that the CT scan “shows very little,” but that the blood test is “good enough” to get me into the trial. What she really means is that it was bad enough to get me into the trial. Don and I have both gotten our wishes, but we know from the start that the results of the trial are as uncertain as the grounds on which we are making our decision to embark upon it.