“I Don’t Know”

“I Don’t Know”

Don S. Dizon, MD, FACP

@drdonsdizon
Feb 11, 2016 11:19 AM

Most times, I feel excited to be an oncologist. Oncology research is accelerating and every week brings more news, whether it be a deeper understanding of tumor genomics, a broader understanding of cancer genetics and risk, and, it seems, more ways to provide precision therapy. Studies are coming out showing gains in survival in many different cancers, and in my time as a practicing oncologist, I have seen specific cancers become more controllable, treatable, and—yes—even curable.

However, sometimes I am reminded of just how much we need to learn and to do, of how oncology can still be such a difficult field. This was the case with Jayne*.

Jayne and I met after her diagnosis of endometrial cancer. The tumor had not left her uterus and was at its earliest point of diagnosis. She had stage IA disease. I was sent to her from a colleague up north, mostly because she wanted a second opinion—to know that indeed, she did not need further treatment. Together, we reviewed her medical history. I learned she presented after experiencing a “period”—odd because she had been in menopause for the prior 5 years. I reviewed the pelvic ultrasound and subsequent biopsies that heralded the diagnosis of cancer. I read the surgical report and had our own pathologists look at her tumor. All of it confirmed what she had been told: grade 2 endometrioid-type uterine cancer, approximately 10% muscle invasion. Pelvic nodes were negative for disease. I also reviewed her CT scan after the procedure—no metastatic disease.

At that consult, I also got to know Jayne. She had been married for 30 years, still enjoyed holding her husband’s hand. They had three kids, all grown up and scattered across the U.S. She still worked as a banker locally, loved to garden, and looked forward to Florida vacations in the winter.

We ended up chatting for an hour, and at the end, I told her I thought she would be fine—that she had the type of cancer surgery cures. I recommended follow-up, told her she did not need chemotherapy or even radiation therapy. She seemed so relieved as she left my office. I honestly thought I would never see her again.

Eighteen months later, however, Jayne was back in my office. She had developed abdominal pain and then bloating. She could no longer wear her pants and was getting full quickly. Her doctors had done a CT scan, which showed fluid in her abdomen and spots in her liver. A tap of the fluid showed cancer, and she was told, “You have metastatic disease.” They had recommended chemotherapy, and she wanted my input before starting.

I had anticipated a discussion about action: what treatment options are, whether surgery was an option, what role radiotherapy might play. I will admit, I had mentally prepared my “script” for the visit, even before I saw her.

When I entered the room, the script went out the proverbial window. Jayne sat there, grasping her husband’s hand. She was crying, and it looked like she had been for hours. She looked up at me and had just one question: Why? She remembered how encouraged I was, that I told her she was cured. I told her not to worry, that surgery was all that was needed. Yet, here she was, with metastatic endometrial cancer. Her distress was palpable and I could not help but feel that I had failed her.

I am often most humbled in situations when cancer reminds me again that it does not follow textbooks. I see it in the faces of women like Jayne, whose cancer “should have” been cured but wasn’t; I see it in the faces of women whose tumors “should have” responded to chemotherapy but progressed anyway. So often, the one question patients have is, “Why?” It’s like a pressing need to understand how this happened: Why did it return, and why didn’t “it” work?

I am reminded that with cancer, there are no guarantees, that a 90% chance of cure still leaves a 10% chance that it won’t be; that a 56% chance of a treatment response means that more than 40% won’t respond. I suppose I could’ve told Jayne that—how I never guaranteed she was going to be cured and that cancer is highly heterogeneous, how it’s likely that a subpopulation of her cancer had survived the surgery and was now growing, or alternatively, attribute her relapse to cancer stem cells.

But the truth is, I could not tell her with any certainty why her tumor returned, just as I cannot tell a patient why her tumor failed to respond to adjuvant treatment. So, instead, I chose to tell her the truth: “I don’t know.” I didn’t know why she relapsed, nor why she wasn’t one of the 90% who were cured with surgery alone. It was hard to say, but at the same time, I felt it was also the most appropriate answer. After she had cried and voiced her questions that really had no satisfying answers, it was my turn to grasp both her and her husband’s hand and begin the process of moving forward.

“Let’s sit for a moment and talk about your goals regarding the future and your preferences for treatment.”

*Name and identifying details changed.

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