Treatment in the Dark

Treatment in the Dark

Don S. Dizon, MD, FACP, FASCO

Jun 19, 2018

Originally published in "Discussions with Don S. Dizon" on The Oncologist.

In an era where health information is freely flowing thanks to the internet and Dr. Google, I’ve come to expect that patients who see me for the first time will have done their homework—about their cancer, treatment options, and yes, even about me. To be frank, it’s not uncommon for patients to mention they’ve watched videos on YouTube or read some of my blogs, or to recite my work history.

I have come to appreciate discussions with such patients; I appreciate the homework they’ve done to learn about their diagnosis, standards of care, and investigational approaches. I feel that I am actually teaching them more effectively about these topics. Ultimately, I think when patients are engaged in their care, these discussions tend to be more thoughtful, particularly when it comes to individualizing therapy as we strive to balance treatment benefits and risks with a patient’s own goals and preferences.

Still, every so often, I run into scenarios that challenge me as a clinician. Such was the case with a patient that stays with me, even years later. Let’s call her Rose*. Rose was a youthful 68-year-old woman who originally presented with uterine bleeding. An exam showed a tumor protruding out of her cervix and a biopsy showed it was consistent with a uterine cancer, grade 2 endometrioid. Typically, a gynecologic oncologist would be pursuing the work-up imaging to evaluate the extent of uterine involvement, to assess for nodal involvement, and to rule out metastatic disease. However, she refused. My colleague had told me of multiple visits held and discussions of how important staging was. Still, she steadfastly refused to proceed with imaging. Hoping to change her mind, he had referred her to me.

Rose was sitting on the examination table when I came in. She smiled warmly at me, without any hint of fear or anxiety. I introduced myself and asked, “Do you know why your doctor wanted you to come see me?”

“Yes, I do,” she said. She proceeded to calmly recite her presentation, the work-up thus far, and that she had cancer. She also recalled the conversations about imaging and the importance of staging. As she spoke, I realized her refusal was not driven by any deep-seated fear of what we would find. She had come to the conclusion that the information was simply not necessary. “I just don’t think I need to do scans. I presented with bleeding, they found a tumor. That’s all you need to know. I feel fine and don’t have any other symptoms, so let’s just go ahead with treatment.”

“But, you understand that the approach to your cancer—both for treatment and for your own prognosis—would be vastly different depending on the extent of your cancer. If we found out you had disease in your abdomen and your lungs, a local approach—with chemotherapy, radiation, and/or surgery—won’t make sense. We would need to treat you for metastatic disease. If we assumed either scenario, I am pretty sure we wouldn’t be helping you.”

“I don’t think the disease has spread. In fact, I feel so good otherwise, I am pretty sure it hasn’t.”

Her certainty floored me, and I knew that speaking about cancer biology and natural history wasn’t going to get me anywhere. “Okay then, what if I told you it would make me feel better to understand the extent of your cancer?”

Her eyebrows shot up as I said this, and looking back, I admit it sounded very self-serving, but I had to try. “Look, I like to think I do my best for my patients, but a large part of that is partnering with them—not just ordering tests like CT scans, but also reviewing the results personally and looking at the images together. Everything I try to do as an oncologist is based on an understanding of what every single patient is facing. I’d like to think I don’t treat patients in big buckets. So, if you’re not interested in doing the scans for yourself, what about you do it for me?”

She considered this for a moment and, to my surprise, agreed. “I never thought about it like that before.  I guess if it will make you feel like you are doing your job better, then okay.” With that, I tried my best to proceed with the CT scan that day, worried that she’d change her mind.

“I can’t do it today!” she said. “I’ve got things I really need to get done. This cancer thing has really thrown a wrench in my plans.”

“Okay. We’ll order the scan for tomorrow, but you’ve got to promise me you’ll do it,” I said. She thought for a minute before nodding her head. We finished up the visit and made plans to see each other in 3 days.

The next day I got a call from my nurse. “Rose called last night and cancelled the scans, but she said she’d like to see you today.”

“Well then, let’s put her on my schedule,” I said. At that point I was more than just a little frustrated. I had worked hard to generate a bond with her, hoping to help her see that we were going to walk through this cancer together. At that moment, I felt I had failed.

When Rose came back she was so apologetic. “I know I said I’d do the scans for you, and I am sorry I changed my mind. But, honestly, I think it’s local and I’d like to treat it that way. If I’m wrong, so be it. I guess time will tell, but I’d really like to work with you.” It took a bit of time to convince my gynecologic oncology colleague, but ultimately we treated her for locally advanced disease.

It wasn’t ideal and certainly was not what I wanted. But ultimately, this was a patient who needed to do cancer her way, and making it about me was not going to work. Indeed, no matter the patient, it’s never about me. I have learned to accept the decisions my patients make and more importantly, I’ve learned to work with them to construct a plan that is acceptable to them, and to me.

*Details changed to preserve anonymity.


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Brenda Denzler

Jun, 23 2018 9:42 AM

This is a great article.  I did something similar to/with my doctors when I was going through cancer treatment.  I had inflammatory breast cancer, wherein the customary surgical response is to remove all axillary lymph nodes.  I fought like crazy to preserve them or, failing that, to minimize the damage caused by surgery by not allowing axillary radiation.  In fact, I asked the radiation oncologist to re-do the treatment plan because there was too much scatter to the axilla for my comfort.  I didn't want stray rads to fry the little lymphatic capillaries that were trying to re-grow in that area. 

I realize that my obsession with my axillary nodes didn't make sense to my doctors.  I think I know why, too.  They were focused on the cancer, pure and simple, focusing on "my life" only as an abstract proposition--something they hoped to make sure I had more of.  I was focused on the cancer, but it wasn't a pure and simple mono-focus.  My axillary health was part and parcel of a continuing life that I was envisioning and planning to have.  There was nothing abstract about it. 

In that continuing life that I was taking as a given, I wanted to have as intact an axillary system as possible, both for functional reasons and because I didn't want to be put in the position of having a secondary, lifelong illness as a result of my treatments.  If they were going to give me my life back, I reasoned, then I wanted all of it back, not just a portion of it. 

So I get your patient.  I mean, I think I understand her reasoning.  She was planning on life.  You, on the other hand, were trying to avoid death.  Those two ways of viewing the same problem can result in very different priorities. 

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