When's the Right Time to Mention the 'C' Word?

Don S. Dizon, MD


November 11, 2019

I had been asked to see a young woman on the general medicine service. Earlier her mother had wheeled her into the emergency room where she then described a history of back pain lasting several weeks that had gotten steadily and significantly worse. She could not think of an inciting event—no trauma, no fall, no sports injury.

By the time she came into the ER, she could no longer walk. A CT scan showed a lesion in her lumbar spine, which the radiology report commented was "consistent with metastatic disease." She was admitted for further evaluation and management.

I sensed how her life had suddenly and dramatically changed with one word: cancer.

My fellow had fielded the consult and called me to discuss it before seeing her. "I guess the team just wants us to know about her," she said. "Apparently, their medicine attending is insisting we see her now."

After hearing the story, I was certainly concerned about cancer, but I didn't want to assume that's what it was. My fellow then proceeded to outline the workup in progress—a smorgasbord of bloodwork, imaging, and plans for biopsies. We reviewed her medical history, family history (no history of breast or ovarian cancers), and social history.

"Well, the workup sounds about right," I said. "They really need a biopsy."

"Does she know it might be cancer?" I added.

"Yes. Apparently she started crying when told that we were going to be seeing her," the fellow said.

"What do you want to tell her now?" I asked, beginning to prep for our eventual conversation with the patient.

She paused for a moment. "I am not really sure where to go with this, especially without a diagnosis," she said. "I'm curious to see what you're going to say."

En route, we stopped at radiology to personally review the films. We also pressed the radiologist as to what else this might be.

Times like this remind me why I fell in love with medicine rather than surgery, obstetrics/gynecology, or other specialties. As a medical student, I was guilty of writing 3-4 pages on the differential diagnosis; going through each possibility; and documenting what was in support, and what was against, each one. It felt like I was on a show—Medical Mysteries—and I found myself completely absorbed in what I was doing. It helped that my mentors, both my attendings and residents, encouraged that degree of investigation.

Even now, I think it is important to entertain a differential diagnosis. Many times in my career someone was told they had cancer, only to find out after a workup that this was not the case: It was Paget's disease, not bone metastases; sarcoidosis rather than lung cancer.

After we were done in radiology, we met with the patient. I introduced myself and my fellow. "Good morning," I began. "I'm Dr Dizon and I specialize in women's cancers. Do you know why we are here?"

"Yes. It's because I have terminal cancer—bone metastases. I've read about it on Google since they told me. It means I'm going to either become very sick due to chemo or I'm going to die. Or maybe both," she said.

I could hear the anguish in her voice, see that "deer in headlights" look in her eyes. I sensed how her life had suddenly and dramatically changed with one word: cancer.

Cancer is not a disease anymore—it's a collection of them.

I could have gone into what kind of cancer it might be, what stage this could represent, what treatments we could give, and what expectations for survival she should have.

But I chose not to do that. I started slowly, explaining that at this point the scans suggested a diagnosis of metastatic cancer to the spine, but they were not diagnostic of this. I explained the importance of a tissue biopsy. I found myself explaining what else this might be, beyond cancer.

"Right now, what we need is a biopsy; we need to figure out what's going on in your bones. Until then, I am not convinced this is cancer," I said.

She looked at me, almost incredulously. "Wait, so there's a possibility that it's not cancer?" she said. "Is that what you're saying? Why would they call it cancer? And why would they call an oncologist in to see me? I've been so scared. And now it's possible it's not even cancer?"

Where I'd seen despair, now I saw anguish, as if she wasn't sure whether she should be laughing or crying.

"Right now," I continued, "all bets are off. It could be cancer, but it might not be. We need more information, so for right now, let's do the workup that's needed. We'll follow you closely until we know more."

An exact diagnosis has become even more important than it was in the past.

We talked a little bit more, and after she was done asking more questions, we went off to find the primary medicine team. The discussion had left me a bit unsettled. I wasn't sure that I had helped her personally, and I worried that I had undermined her inpatient team by suggesting that they were "wrong."

After locating the intern and the attending, we discussed what had transpired. We talked about the likelihood of it being cancer (intermediate to high) and what kind of cancer it might be. I talked about how important it was not to presume a diagnosis of cancer and I explained why I felt this way. This diagnosis is met with incredible fear—about the future (or the loss of one), about disability, and even death—and it's even harder when a patient is young and in the proverbial prime of his or her life.

I went on: As oncology moves toward genomics and precision therapies, an exact diagnosis has become even more important than it was in the past. Cancer is not a disease anymore—it's a collection of them. As such, at this point I was loath to launch into a discussion on cancer, how it's staged, its treatment, or its prognosis.

I also talked about my preference to consult on new patients only after a diagnosis has been rendered, not before. Here I was met with some pushback. The attending in this case explained his rationale for our early input: "If I think it's cancer, I want my patient prepared for it, even if it means meeting you before we are sure. I think there's a benefit to meeting someone while the workup is in progress, to let them know that yes, we will take care of this."

I definitely saw his point. I now knew our mutual patient, and perhaps building trust early was a good thing.

"Well, until we have a biopsy and histologic proof of cancer, it's probably best not to presume that that's what we are dealing with. I think we can agree on this?" I said.

With that, we all shook hands and my fellow and I went off to see other patients.

Ultimately she was indeed diagnosed with cancer—metastatic colorectal cancer. Because that wasn't my area of expertise, she was seen by someone else in my practice. I kept tabs on her treatments from afar, hoping for the best outcomes and certainly that her quality of life was better than when I had met her in the hospital.

There is a saying in medicine: When you hear hooves, think of horses. While that might be true, it's still important to remember that each and every patient seeking our help deserves the most definitive workup we can offer in order to arrive at a diagnosis. Assumptions have no place in our field, particularly when it comes to cancer.

Don S. Dizon, MD, is an oncologist who specializes in women's cancers. He is the director of women's cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital.

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