How Common are Mistakes in Diagnosis?

In November 2015, right before the holidays, I received my breast cancer diagnosis. From the beginning I was told that my cancer was Stage 1 and that I had caught it very early. My tumor was classified as T2, which is Stage 2 because of it’s size. I questioned whether I in fact had Stage 2 breast cancer, but I was assured that I had caught it very early. I chose to be very aggressive with my treatment out of the knowledge that my level of cancer cell aggressiveness warranted it. I knew in my gut that a total double mastectomy followed by chemotherapy was needed.

Flash forward three years and three oncologists later, I found out last week that I was originally classified wrong. My new oncologist told me that I was in fact Stage 2 from the beginning based on my test results. It makes total sense considering that I had “infiltrating ductal adeno carcinoma.” Infiltrating means the cancer had spread out of the duct to surrounding tissue. Stage 1 breast cancers have not spread and usually Stage 2 breast cancers have not spread to lymph nodes, but sometimes they can if they are close to the tumor. The size of my tumor was definitely Stage 2.

When I spoke to a close friend of mine that is a cancer survivor about this misdiagnosis, she told me that she was originally diagnosed as Stage 2 or 3, when in fact she later found out that she was Stage 4. I began to wonder if this was common. A quick internet search revealed that 1 in 3 cancer patients are misdiagnosed. The National Academy of Medicine reported in 2015 that most people will receive an incorrect or late diagnosis at least once in their lives. Sometimes with serious or life threatening consequences. The report cited that an estimated 5 percent of adults who seek outpatient care — are misdiagnosed annually. That’s roughly 12 million people. Yikes!

I don’t want to scare you, but it makes being your own advocate that much more important. Looking back, I did question the original staging, because my research kept showing that it was possibly Stage 2. I was scared, new to cancer, and overwhelmed, so I deferred to my doctor and let it go. Even the second oncologist I saw didn’t say anything, but my new oncologist was very thorough with my records and questioned me about it. Lucky for me, that misdiagnosis did not impact my treatment or outcome, but it could have if I had decided only to do a lumpectomy and not remove my breasts or if I had decided to not do chemotherapy. I am glad that I went with my gut and attacked my cancer with everything they had, but looking back, a second opinion would not have been a bad idea.

If you find yourself questioning a diagnosis or not feeling comfortable with any medical information that is given to you. Get a second opinion. It cannot hurt and ultimately, it is your right to ask questions and gain information about your condition and treatment.