The words we choose are important and in particular, your guidelines carry much weight. Eliminating the word ”preferred” can have repercussions far beyond what we may first conceive. Active Surveillance Patients International (ASPI) webinars reveal a relentless march towards AS internationally. The US trails Europe in that march. Some nations in Europe have achieved 90% of low risk choosing AS. Our nation is just over 50%. For us to eliminate the term “preferred” represents a retreat, and could hinder that march.
ASPI’s Board has many years of AS experience and speaks now with a united voice. On the Ustoo.com website we still read of cases of men over treated and suffering from incontinence and ED. Men who may have had the opportunity to enjoy a high quality of life had they chosen AS are needlessly suffering. Sixteen years after a Gleason 6 diagnosis I chose AS. Today I am blessed to have no clinical evidence of cancer. My quality of life was preserved by choosing AS.
It is critical that we do everything we can to encourage AS. Nor should any of this indicate that ASPI is in any way anti-treatment. In fact two of our board members have elegantly progressed to treatment. The treatment they have now undergone may not have been available when they first decided on AS.
AS should be the preferred choice to preserve quality of life for men with low risk cancer. Also that decision allows more time for men to investigate, and for the evolution of new technologies should their cancer risk change.
The PIVOT trials indicate for low risk disease there is basically no advantage to intervention. Why would one risk the side effects if they knew that?