Help Me to Help Future Cancer Patients

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When you’re diagnosed with breast cancer, you’re introduced to a whole new language.  Terms and concepts come at you faster than you ever believed possible. Throw in the emotional impact of receiving a cancer diagnosis and suddenly high school, college, and university start to look good. In school, at least you’re given time to process and understand new information. The end result, if you don’t know your information, can mean a failed exam or failed course. With a breast cancer diagnosis, the results of not understanding what you’re being told can mean wrong decisions with far-reaching consequences.
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For me, and I suspect many other people, most of the information I received was verbal. I went to my appointments and sat there while my doctor told me the results of my tests, including the pathology report after my mastectomy. Even if I believed I understood what was said, when I got home, what I thought I had heard correctly sometimes lost its clarity. In some cases, to help me grasp information, I changed wrong words into words I was familiar with.

For example, the medical term “axillary” became “auxiliary” in my recollection of what the doctor told me about my lymph node involvement.  I had cancer in the two sentinel nodes I had tested, which, because of the term sentinel, I believed that the cancer had breached the first line of defense. I then believed, like the military, that the backup of the sentinel nodes was the auxiliary ones. It made perfect sense, but I had the terminology wrong.

Part of the problem was that all the information I received was verbal. I went to each of my appointments to get test results and listened as my doctor explained to me results of tests and next steps. As someone who prefers looking at pictures, as well as reading, getting information verbally was not the most effective way for me to receive and process my information. In fact, my radiation oncologist drew a crude picture of hormone receptors on a cell and that is my most memorable piece of information.

In May, I will be making a presentation, “Learning Styles and the Cancer Experience,” at a technical communication conference in Washington, D.C.  I’m hoping that by sharing my cancer experience and providing examples of how educational material could be improved, cancer patients will ultimately receive their cancer information in a way that will be easier for them to understand. 

This is where I need your help. If you are currently a cancer patient or a cancer survivor, I need your stories. I want you to tell me about how you received your cancer information.  Were you reliant on the doctor telling you information? Did you go online to find reading material or were you more comfortable reading printed material? Did you ask for copies of your medical reports to read after you left the doctor’s office? Did you join cancer groups online to get your information?

You get the idea.

If you want to help me to help improve the way that cancer patients receive information, you can add comments to this post, email me directly at laughterandcancer@gmail.com or use the Contact page on my website at laughterandcancer.com.