Do You Understand Your Diagnosis?

March 16, 2020

Health literacy is important for any patient with cancer trying to understand their diagnosis, and they need help from their care team to gain that.

The day I was diagnosed it didn’t matter that I had a master’s in communication because I heard very little after the words you have cancer. It made me realize that if I was confused, how were other women without as much education handling the information, usually, given by doctors who always talk fast.

There are now consultants that help medical folks use plain language to overcome the barriers to understanding, which include not only obvious ones such as the inability to read or write, but also areas such as suffering a disability of some kind, or being a worrier or a woman who sees her worth in doing everything for everyone.

One professional consultant on health literacy wrote a book about the topic, but found when she was diagnosed, she couldn’t hear what the doctor was saying,

On the day I first heard the words you have breast cancer, I was sitting in my surgeon’s office. Today, I can still provide a sketch of the room and every nick knack on the shelves. Luckily, my husband at the time was an engineer and remembered every word she said, and where she stopped to breathe. I was in mother land, mentally holding my year-old daughter and remembering how hard it was to get pregnant and how unimaginable it was that I might not be around to raise her.

I will never forget when my oncologist asked me to do a skit with him at a meeting of oncology fellows, the baby docs who were preparing to take on real patients.

He read my actual pathology report into the microphone as if he was actually doing it the first time. I was staring at him intently; I am sure I looked like I was totally into what he was saying. Nothing could have been further from the truth. In the skit, when he said something that would set off a mental reaction for me, I would turn to the audience and start whispering into my microphone what I was thinking.

For example, I was diagnosed in mid-October and as he was going over the timeline for treatment, I heard the four months and realized that was through the holidays.

“Wait, this is my year to host the family for Christmas dinner and, of course, I have always handled the surprise gifts for the children. I love doing that and it is a tradition. Will I be able to do that this year? And what about the Alzheimer’s gala. I am finally chair and most of the work is in December. Who will do it? How am I going to tell the kids? Susan is pregnant and I can’t add this stress to her life.”

You get it.

Of course, while I was at Christmas, the oncologist was still talking. He had no idea I had gone away.

I had a number of oncology fellows tell me that no one in a classroom could tell them what they had just seen. I have heard since then that they know their patients will need lots of information repeated before they hear it.

This brings up another issue of literacy. The only way to guarantee that cancer patients get the information they need is to get to know them and how they communicate personally.

And for most of us, when doctors start with statistics, we could be sitting in their lap and we wouldn’t hear them. I am a writer because I had to take statistics in my other chosen major. If you are one of the lucky ones who is a number person, hearing all the statistics is fine but when it’s about relative risk versus absolute risk — back up and tell me what means to begin with.


x