"Survivor" or Victim of Over Diagnosis?

When I peruse the web site for the thyroid Cancer Survivor's Association, I have mixed reactions. The site does provide information about the high survival rate for the most common thyroid cancers, but the management does not seem to be proactive on promoting the latest research findings on over diagnosis and over treatment of thyroid cancer. Basically this research is forwarding the view that most common type thyroid cancers , even most of those that have gone into the lymph nodes will never progress to kill the host. Other cases are the intrathyroidal type (confined to the thyroid) which are even less likely to progress and kill someone. Yet the standard practice nowadays is for total thyroidectomy and in many cases RAI treatment, done and given in the belief that these "cancers" are going to spread and kill you if they aren't treated aggressively.

The Journal of the American Medical Association has taken notice of this situation in thyroid cancer - a burgeoning number of cases coupled with treatments which are of dubious benefit. They came out with an article urging that some types of tumors that do not have a high probability of killing you should be reclassified as IDLE tumors. This is suggested in hopes that doctors and patients will stop panicking at the use of the word "cancer" when the prognosis is highly likely to be outstanding.

This is a difficult thing to say, but I wish the patient advocate sites would stop trying to scare people by posting videos about people with advanced metastatic disease, the implication being that this could be you if you don't get radical treatment for low risk thyroid cancer, or if you fail to get your neck checked every year.

The probability is high and supported by research, that "low risk" people seldom have the same disease as those with progressive disease. Its likely that the genetic make-up of their tumors is different and that all thyroid cancers should not be lumped together under the same umbrella. This is not to say that people with progressive disease don't deserve support, but that this model of inevitable progression needs to be re-thought. This disease needs to be framed correctly.

I don't want to be labeled as the "survivor" of something that was never going to kill me. I think its counter-productive and obfuscates getting to the truth about this disease.

Responsible responses would be appreciated.

Edited October 11, 2013 at 4:02 pm

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