You are your own best advocate

For five years, as the regional director of Sharsheret–a Jewish breast and ovarian cancer support community–I spoke to women and men in the Chicago area about patient self-advocacy.

We put our trust in our physicians, as we should, but the patient also has a role to play; medical care is about teamwork. The patient knows their body best-what is a change, what is normal, and what doesn’t feel right. Just like our medical partners, we also must be diligent about our care. 

After years of being a messenger of cancer awareness, it should come as no surprise that my own cancer diagnosis earlier this winter arose from my own self-advocacy. I went for a routine MRI, I heard back from my physician, and I knew my next steps.

But something was nagging at me. I had read the MRI report, and while the majority was medical jargon that I could not understand, I did read at the bottom of the report “incidental finding…could be further evaluated…”.

My doctor made no mention of this when we spoke, the nurse made no mention of it when we exchanged messages about my care, and yet, it bothered me. If there was an incidental finding, shouldn’t I look into it? I followed my own advice, and I called my primary care physician, requesting a follow up. I was assured this was likely to net no interesting results, but nonetheless, I went for further testing. Less than a month after my initial MRI, I found out that I had thyroid cancer.  

I know my findings were rare (in fact, 95% of thyroid nodules are benign, according to my primary care physician), but my experience still serves as a lesson. I have shared this story with friends and family, and they have commented that they never open their own test reports in their online medical portal.

My message now remains the same as ever: Be your own best advocate. Open the reports and read the medical jargon, because something might stick out to you too, and you will want to know what it means–for peace of mind, or for an early diagnosis.  

Eve Reingold Kleinerman serves as the Director of the Norton and Elaine Sarnoff Center for Jewish Genetics in Chicago. She is the former Illinois Regional Director for Sharsheret.