Exam Room Conversations – Finding Your Voice

August 27, 2020
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Doctor and patient

My uncle, a former Massachusetts physical education teacher and football coach, had a tough exterior and an authoritative air – personality features that served him well when corralling high schoolers through outdoor exercise routines or game plays in the frigid Boston air. His personality carried over to family debates – in any family conversation, whether about the presidential election, the state of the economy, the Boston Red Sox, spackling drywall, Grandma’s ailments, or Aunt Sue’s apple pie, he would issue his opinion loudly and confidently. You were lucky to get a word in edgewise. His pronouncements usually settled the discussion.

Then came his cancer diagnosis. Full-stop. Suddenly, he was faced with the complexities and unknowns of a complicated disease, experimental treatments, and many potential side effects. The man so used to displaying authority on every subject now found himself in the unfamiliar and uncomfortable position of having to ask questions about medical terms he couldn’t pronounce. The man accustomed to brushing off aches, pains, or the occasional flu now had to share embarrassing side effects. With highly-trained, incredibly smart Boston doctors, no less! My normally self-assured uncle was initially overwhelmed and frustrated – he wanted to take command of the treatment decision-making process, but didn’t know how or where to begin. 

My uncle’s case is not unique. The latest findings from Cancer Support Community’s (CSC) Cancer Experience Registry® – an online survey for anyone touched by cancer – tell us that 1 out of 2 cancer patients in our registry did not feel prepared to discuss treatment options with their doctor and 1 out of 3 held back from telling their health care team about side effects and symptoms.

A cancer diagnosis often throws the individual through a loop. It requires new ways of communicating and the formation of new relationships with medical staff. Elaine, a lung cancer patient, describes it this way:

“I had many challenges from my treatment at the very beginning. The original chemo was very tough to handle. My relationship with my health care team grew over time. At the beginning, I didn’t know what to expect…Through time, I came to realize that they’re phenomenal. I learned that it’s okay to ask. It’s better than okay. It’s necessary.”

By gathering patients’ and survivors’ experiences through the Cancer Experience Registry, the research team at CSC has been able to identify common but often-overlooked challenges that come with a cancer diagnosis, including gaps in treatment decision-making and exam room communication. The information has enabled CSC to develop resources and programs, such as Open to Options®, that empower patients and survivors by giving them the tools they need to have challenging, yet important conversations with their health care team. 

My uncle eventually regained his footing and treated his disease as if it were the opposing football team competing for the county championship. The doctors who had initially intimidated him became his players. Once again, we heard his loud, confident voice as he recovered the assertiveness and directiveness that had always defined his character and pushed his teams towards a win. And, of course, there was our family in the stands, cheering him and his team on.

If you or anyone you know has been diagnosed with cancer, or has been a caregiver to someone who has, let your voice be heard. Fill out the Cancer Experience Registry survey today.

To learn more about our findings from the Cancer Experience Registry, read the new 2020 Cancer Experience Registry Report.