Thursday, March 23, 2006

The Story Behind This Blog

While much has been written about false negative diagnoses of cancer -- where cancer goes undetected -- false positives are rarely discussed. As a thyroid cancer survivor in remission for five years, I went into my routine tests confident that they would confirm that I was as healthy as I felt. So I was shocked when my doctors told me that my scans seemed to indicate that my cancer had returned and urged me to undergo radioactive iodine treatment. I asked the doctors if there was any way that this test could be wrong; if there was any other explanation for the "spots" they saw. They assured me that the only explanation was that the cancer had returned and urged me to act quickly.

I took their advice and underwent the invasive radioactive iodine treatment. The doctors, unsure that the treatment alone would be enough to bring me back into remission, recommended surgery as a next step. At that point, I decided to turn to MD Anderson for help in determining what to do next. It was through several CAT scans and ultrasounds that I learned that there was no sign of cancer in my body. While I would love to believe in miracles, the only reason for the discrepancy was clearly an initial false positive. The treatment I was given takes six to 12 months to work and it had only been six weeks.

The team of doctors who diagnosed a reoccurence failed to apply critical thinking. Had they done so they would have deduced that the first "spot" was actually scar tissue remaining from my thyroidectamy several years ago and that the second "probable tumor" was the result of my thymus gland absorbing some of the testing fluid. Apparently, this happens sometimes. Had my doctor considered these posibilities or ordered more tests before rushing me into an invasive treatment, they could have easily confirmed that I was in remission.

My first reaction to finding out that I was cancer-free was obviously a huge sigh of relief. But it didn't take long for the anger and fear to set in. Why did these doctors fail to question their initial diagnosis when, going into the test, they told me that my history of clean scans made it unlikely that the cancer would return? What would the impact of this substantial dose of radiation be? I already knew I would need to put off starting a family by a year and that this type of radiation is taken up by breast tissue and could possibly lead to breast cancer later in life. The physical and emotional effects from this treatment were quite traumatic. When you believe that the treatment can save your life it becomes important. But when you look back and realize it was for nothing, it loses all of its meaning and morphs into a feeling of violation.

I started this blog so that those impacted by cancer would have a forum in which to share information about false positives. The goal is twofold: First, to provide a discussion venue for cancer survivors who have experienced a false positive; and, second, to centralize important information that anyone can refer to if they are faced with a cancer diagnosis that doesn't seem quite right.


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