Originally published in "Discussions with Don S. Dizon" on The Oncologist.
One of the most valuable jobs I held following fellowship was working as a full-time deputy editor at UpToDate. My “territory” was breast, gynecologic, and genitourinary oncology, and I helped launch cancer survivorship and palliative care. I learned to really and critically read the literature, and how I could summarize it quickly so that my audience—whether colleagues or my own patients—could understand what we learned, and the limitations of those results.
Part of what I learned was to use the terms “recommend” and “suggest” with care. At UpToDate, only those findings backed by the strongest evidence and results were called recommendations. The upshot being that whatever the action, it should be done as standard of care. So, when I wrote a topic on HER2-positive breast cancer, there was overwhelming evidence that trastuzumab was useful. Therefore, I wrote, “For women with newly diagnosed HER2-positive breast cancer, we recommend adjuvant trastuzumab.”
In the absence of this high-quality data, there might still be evidence to point towards one course of action over another. However, realizing that the results were not conclusive and that different clinicians may come to different conclusions, we still strove to point out a reasonable direction. These would become “suggestions,” such as, “For women with recurrent platinum-resistant ovarian cancer, we suggest liposomal doxorubicin rather than paclitaxel.” Even as I’ve left UpToDate, I’ve adopted this language and the way I think about my own approach to conversations with patients.
This lesson from UpToDate to be precise in our language is especially relevant today, when new treatments are emerging, and patients are faced with different options on how to approach their own cancer. As they seek second opinions, it’s entirely common for them to walk away with a “recommendation” that differs from the one they got previously. I believe the job of one who delivers a second opinion is to provide it honestly, based on their own review and based on what they believe is the best course of action. However, when one rendering a second opinion does so without acknowledging differences in an approach—that is, suggesting rather than recommending one course over another—a patient may be left with confusion rather than clarity, and perhaps worse, the fear that someone is wrong.
Such was the case with a patient I met early on in my life as an attending, as I transitioned from Memorial Sloan Kettering Cancer Center (where I often rendered second opinions) to Women & Infants’ Hospital (where I often sent my own patients for second opinions). Mrs. Jones* had seen me after her surgery for a new breast cancer. She had been healthy all her life, and this diagnosis at the age of 42 was a shock. We talked about her pathology and I sought to reassure her that she would be okay. The lymph nodes were not involved, despite the 2.5-cm size of the tumor. It was also hormone receptor positive and did not express HER2. We had not been using genomics to help guide treatment then (dating myself, I know) so based on her age and the tumor size, I felt it would be reasonable to proceed with adjuvant chemotherapy and she agreed.
“I want to do everything I can to never experience this again,” she said.
With that, we discussed options for treatment. Based on the node negativity of her disease, I suggested docetaxel and cyclophosphamide (TC) rather than the use of an anthracycline-based regimen. “There are data that four cycles would be as good, and I could spare you the risk of heart toxicity,” I explained.
“That sounds good to me,” she said, “but I’d like to get a second opinion.”
“Absolutely!” I said. I suggested folks in the nearby comprehensive cancer centers flanking Rhode Island, and we made arrangements to meet after her consult.
A few weeks later she called my office. “Hi Dr. Dizon,” she began. “I’ve decided to transfer my care. The doctor I saw in second opinion told me that no one would give me TC, and that the advice was misguided. He explained to me that doxorubicin was absolutely necessary and that if you wouldn’t give it to me, that I should go elsewhere. It really scared me and it’s my life on the line. I will be getting doxorubicin with him.”
“I am so sorry to hear this,” I said, a bit stunned. “At the end of the day, you have to feel comfortable with not only the oncologist you see, but the treatment you are getting. I think TC would be a reasonable option, but as we discussed, so is an anthracycline. Thanks for letting me know what you were told, though. If you ever need me in the future, I am here to help.”
With that, we hung up, but I was so flustered by what she told me that I reached out to the oncologist she had seen to understand what was said. If I was wrong, I needed to understand exactly why.
I spoke with him later that week. He explained that he had not told her I was wrong but that the standard of care at his institution was to still utilize an anthracycline. We discussed the evidence on the role of both options and why I had recommended TC. “Look,” he said, “we both know the data and we both know each is acceptable. I fall into the camp that have not adopted TC as an alternative, that’s all. But I can assure you, at no point did I say you were wrong.”
As we hung up, I had no reason to doubt his sincerity. We had known each other for many years, and we had a mutual respect for each other. It occurred to me then that what we say can be interpreted in different ways—that when suggestions diverge between a primary and secondary opinion, patients can be left trying to understand why, and in this context, what is not said can be more important than what is. By not directly acknowledging clinical equipoise (i.e., that there is no definite right answer), a reasonable patient can make the conclusion that one of their doctors is wrong.
Following this experience, I have made it a point to acknowledge the availability of alternative approaches when they are present, and to ensure that patients walk away understanding when my approach is a recommendation based on the best data we have, and when it’s a suggestion in situations where reasonable clinicians may come to a different conclusion. I think I owe it to patients to be clear, but as important, I owe it to colleagues to acknowledge that their professional opinions are as valid as my own.
*Name changed to protect patient privacy.