ACADEMY PUBLIC POLICIES

 Real story

 I first met J. when he walked into my office with his children for a consultation. He was in his sixties, of average build, with a gentle face, curly gray-black hair, and the appearance of someone whose work was physical. He wore jeans and a T-shirt with a pack of cigarettes rolled up in one side. His hands were rough, his talk straight. I would later come to know him as a happy, garrulous, backslapping man, a man’s man who would do anything for his friends and family. In time, he would come to treat me as a son and endlessly philosophize about life, women, and what counted, hoping something would sink in that might do me good; sometimes I even managed to get a word in edgewise about his health.

On that day, however, J. was a crushed man, for he had recently been diagnosed with advanced cancer and told that it was “terminal.” Two weeks before we met, he had gone to the emergency room complaining of sudden, severe abdominal pain. A CT scan revealed multiple tumors in his abdomen and liver. Soon after, he underwent a liver biopsy, and it showed “poorly differentiated carcinoma.” He met with an oncologist who told him he had, not liver cancer, but a type of cancer called “unknown primary.” This diagnosis means that a cancer starts in an organ (such as the breast, pancreas, lung, or prostate) and spreads to other regions in the body but the original cancer can no longer be found. J. was told that he had a very aggressive form of it and that his life span would be measured in months, even with treatment. To make matters worse, J. felt that the doctor was matter-of-fact and offered him no hope, something he could not accept.

With his head hung down and eyes glazed red with emotion, J. gave me a soft-handed shake as he sat down. He shook his head to clear away the heavy webs of grief and spoke in a steady voice. “Doc, I’ve come to you because I know about you. I heard you came from that big cancer center in … I know what I have is not good, but I’ve come to you for hope. I need someone to help me fight this battle, even if I lose the war.” His devastated children nodded and touched him as if to transfer some of their strength.

It is moments like these that make me feel as though my head is in a vice. I so want to make things better. I want to be a magician, defy the reality of a bad diagnosis, and pull the proverbial rabbit from a hat. But I know the difference between wiggle room and a fait accompli. In this case, although I thought the other doctor would be correct in the end, I saw one little stone left unturned. “I spoke to the pathologist who read your biopsy. I asked him to perform additional testing on the sample, which can sometimes indicate the exact organ of origin. But he is unable do so because the sample is too small. Your first biopsy was taken under CT scan guidance. Though it may not change anything, I want you to undergo surgery so we can have a larger chunk of tumor for analysis.”

I felt that if I could not help him to live for much longer, I could at least give this man what he needed right then, a true sense of hope. He needed to leave my office believing that I believed there was hope for his survival and that I would fight for it. “Doc, I know you’re not a miracle worker, but I feel you’ll fight for me. I’ll do whatever you say if you think it can possibly help.”

The operating surgeon removed the needed piece of cancer but could do little more than that because of the large masses of tumors that filled J. abdomen and liver. Yet the surgery was worth it. The new pathology report changed the diagnosis. J. did not have a carcinoma; instead, he had a rare type of sarcoma (a tumor derived from the supportive, connective tissues of the body) called GIST.

When J. returned to my office with his wife, S., it was clear that his condition was deteriorating fast. His eyes had a sunken look, he was visibly in pain, and his belly was swollen. “J., you have a rare type of cancer called GIST, which stands for  gastrointestinalstromal tumor,” I said. “Our current methods of treating cancer with chemotherapy and radiation are useless against this cancer. But I have made some calls and found out that an important clinical trial is studying a drug called STI-571 to treat GIST. The drug is working wonders in patients with leukemia and appears very promising against GIST. I have spoken with the people in charge of the study. They’re expecting you.”

I walked them to the door and gave S. two prescriptions. On one I wrote “Oxycontin,” for pain. On the other I wrote “STI-571,” with the contact phone number. “Don’t leave the city without it,” I whispered in her ear. S. bear-hugged me and looked me right in the eyes, speaking volumes without words; she turned away and they were gone.

One month later, J. strutted into my office, and I laid eyes on a new man. “Hey, Doc, how are you? I’m great, no pain, eating again, hasn’t felt better in months!” He had an impish grin and twinkling blue eyes and gripped me in a strong handshake.

J. was in the original group of patients who received STI-571 (later named imatinib/Gleevec) in a clinical trial that demonstrated its remarkable activity against GIST. He went on to live another two and a half very enjoyable years and touched the lives of many others.