The largest cancer meeting in North America just wrapped up. Held annually in the spring. the American Society of Clinical Oncology meeting is where many big advances and discoveries are announced. This year, the highlights included a study that showed that moderate exercise improved survival in colon cancer patients as much or greater than many chemotherapy agents. Another study showed that treatment for breast cancer could be modified based on levels of cancer DNA circulating in the blood, increasing the lead time and success rate of new treatment over waiting for imaging tests to show new “spots.”

In reflecting on these findings, oncologist Daniel Flora, MD, PharmD pointed out a flaw in how we talk about “success” in clinical trials. The endpoints that researchers typically use are binary and designed to counter ambiguous interpretations. Overall Survival, for example, measures if patients are alive or dead. Progression-Free Survival measures if patients are alive with their cancer controlled or uncontrolled. These yes/no answers condense complicated scientific questions into concrete endpoints that are useful for regulatory bodies like the FDA to make decisions about approving a drug treatment for routine clinical use.

Dr. Flora pointed out that most of us would agree that being alive is great. However, patients surviving cancer often have a more nuanced view. Many older patients begin conversations with statements like “I want QUALITY of life” or “I don’t want to suffer.” A rubric to incorporate these wishes does not exist. Would a patient, for example, trade a better quality of life for a 20% less chance of cure? 10? 5?

Today, I invite you to listen to a conversation I had with two cancer survivors. Both Mark and Yvonne are alive without active cancer. In our professional parlance, they would be considered success stories. And as you hear them talk about their lives after cancer treatment, they are living.

But they are living with life-changing side effects. You will hear about how large chunks of their identities disappeared in the aftermath of cancer treatment. These sacrifices are part of the hidden cost of cancer that is not often discussed (and certainly not used for approval) of new treatments. Years after their last treatments, they have accepted their “new normal” but aren’t satisfied. They want better treatments for those diagnosed now.

Afterwards, I talk with a colleague, Dr. Bhishram Chera, about his groundbreaking work in studying less toxic ways to treat patients like Mark and Yvonne.

I’m not sure, however, that we should be throwing these trials out. Would I, for example, be willing to sacrifice a 5% increase in the chance my cancer would return if I had a better chance of being able to taste food for the rest of my life? Perhaps. But right now, I wouldn’t have that choice. It would be considered unethical to even discuss it.

Enjoy and I look forward to hearing your thoughts in the comments.

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