The Promise & Disappointment of Personalized Medicine

April 24, 2014

Article

“Doc, don’t tell me any bad news, I can’t hear it.” She just said it outright.

Deborah was my "unlucky" patient. I had seen two patients with stage IV lung cancer earlier that day; they had both come in to receive their EGFR mutation analysis results. Tony considered himself "lucky". He had read that he would have a better prognosis if his tumor contained the EGFR mutation, and that he would be fortunate enough to receive the targeted treatment for lung cancer, a daily dose of erlotinib (Tarceva). He would be free from IV poles and hanging bags and Deborah would not and she seemed to know it very clearly already. He felt absolved of any perceived stigma while she felt the acute sting of her terrible diagnosis.

He was lucky and she was unlucky?

So it seemed, but I’m not so sure. I actually felt better about the unlucky one. That may sound odd coming from a young, enthusiastic oncologist in training.

Survival rates for stage IV lung cancer have improved over the last decade but remain undesirable by anyone’s personal estimation. Patients who have an EGFR mutation are eligible to receive the targeted biologic agent called erlotinib. This minority of around 15% of the adenocarcinoma subtype of non-small cell lung cancer have been found to have a better prognosis in general, in addition to having a mutation to target. However, the effect of the targeted therapy eventually wears off for most patients after about 9 months of progression-free survival; the overall prognosis for patients with the mutation is only slightly better on average than those without such a mutation.

Still, for many people the idea of treating lung cancer with a pill can seem less terrible. That is certainly how my lucky patient saw the results of his EGFR mutation analysis. Even after getting a sense of his understanding I said, “It is still incurable, which no one ever wants to hear." His smile faded for a moment or two.

“Which stage?", he asked.

“Four," I said.

“And how long do I have to take this pill, forever?”

“Yes, as long as it’s working. A flare reaction can happen if you stop taking it abruptly.”

“Oh.”

The family wanted more and more information about the pill. Was Tony’s overly inquisitive manner a way to keep up morale for his family? Perhaps. Aside from an underlying sense of anxiety and urgency, there was also a large elephant in the room that was obscured by the miracle veil of the promised targeted therapy. The uncertainty of length of response made it almost impossible to start dealing with this reality. Stage IV lung cancer? Or the new and improved stage IV that may respond for a long time to targeted therapy?

Science and technology promise wonderful improvements to life. The continual emergence of new agents brings us close to that all too human fantasy of control and can also help us escape from facing painful realities, which can be hard for doctors to watch at times. This first encounter has set the stage for a long road ahead. The personal impact of terminal illness will need to be brought up many more times. As much as I want the targeted therapy to work effectively in melting away his lung cancer, I also didn’t know how long he would be avoiding this painful reality in front of him. Something told me that it was going to be difficult. I suppose that some people would interpret that as taking away hope. However, unrealistic hope for a cure makes it more difficult to achieve more obtainable and meaningful goals. Some people may stay in what Elisabeth KÃ¼bler-Ross referred to as the "bargaining stage", with an obsession for medication details or rituals, and striving for the greater sense of normalcy that a pill offers over an IV. This can be harmful to a person if it keeps him from moving on to acceptance.

The unlucky patient did not have the mutation, and could not get the targeted therapy. It really was just Deborah’s luck-this is why she didn’t want to hear any bad news. She was a tough New Yorker with an unfortunate alcohol dependency history who had given up smoking 26 years before. She had seen heartache before, and something told me to just listen to this lady who didn’t want to hear any bad news. I’m glad I did.

At first she was incredulous and defensive. Underneath the preemptive attack on this oncologist "in training", was a pride in her newfound diet and activity level. Her friend, who was in the room, agreed that she was doing well. When her friend left the room, I inquired about her mood, sleep and support system, and indicated that I really cared (because I really did). In an ever-acrimonious tone, she commented that an art therapy flier had been removed from the exam room. Eventually, she opened up to me about her symptoms and also about how hard it had been to live alone. She did not want to poison herself with pills. Understandable. Luckily, she eventually agreed that although her friends had been helpful, it might also be helpful for her to attend a group meeting and get some extra support. After a little bit of concern and help, this tough lady showed a real appreciation for someone who wanted to support her in her journey. True, she was struggling, but who wouldn’t be? The fact that her dysphoria softened with a little genuine support made me hopeful that she would eventually be able to make some kind of peace with the madness that is cancer.

As arrangements were made for her next appointment and her friend came back into the room, I slipped the art and group therapy fliers underneath her appointment sheet and said, “here’s some information on the things we talked about.” Our eyes met, and I knew she appreciated the discrete gesture and the fact that I hadn’t been scared away by her tough demeanor. That is what we are here for and what makes this job so meaningful, I thought. I truly admired her ability be both hard and soft. It’s difficult not to be hard when your life is threatened, yet the soul seems also to require enough softness to let others in. I was assured that she would get what she needs.

The irony was that the unlucky patient who didn’t want to hear any bad news was already hearing it, while the first patient is the one whose polite smile communicated that he was really the one who could not hear any bad news.

Given that these two patients will likely have similar survival outcomes, it might be unfair to our lucky patient to be potentially robbed of the opportunity to come to terms with his illness. The promise of salvation can be illusory, and can contribute to collusion for a false sense of normality, making the metaphysical transition to Susan Sontag’s "kingdom of the sick" potentially more difficult to bear in the long run. Perhaps one of the most important things we can do as cancer care providers is to be fully present to our patients so that we can help them understand the reality of their disease and seek appropriate resources and support.

Disclosures:

Daniel McFarland is a clinical fellow in hematology and medical oncology at Mount Sinai Medical Center in New York City and a member of the American Psychosocial Oncology Society. He is dually trained in internal medicine and psychiatry. As part of the American Psychosocial Oncology Society, Dr. McFarland is currently collaborating with Dr. Jimmie Holland at Memorial Sloan Kettering Cancer Center in an effort to bring psychosocial issues to the attention of oncologists as they treat patients in the new era of personalized medicine. The views expressed are his own.

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