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ASPI letter to NCCN

Recently the National Comprehensive Cancer Network issued new guidelines downgrading Active Surveillance as a preferred treatment to be equal to surgery or radiation.

We feel this is inconsistent with the wider acceptance of AS over the last decade. Below is a copy of the letter ASPI sent to the Chairman of NCCN.

   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?

 

 
ASPI interprets data and shares it with men with BPH, with rising PSA, are newly diagnosed with prostate cancer (PCa), and on Active Surveillance (AS). We are growing a network of Patients, Spouses, Partners, and Sons that communicate with each other to improve our quality of life without fear or stress. We firmly believe that we can empower PCa patients on their cancer journey.
 
It is a huge responsibility and workload that we tackle every day
 
Patients talking to patients will become a very strong voice when it comes to our health care. We are on this journey together and we intend to be healthy along the way.  You are not alone.
 
You can email us at contacts@aspatients.org 
or visit our website at http://aspatients.org

 
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We at A.S.P.I would like to share information from time to time that might be helpful on your journey with Prostate Cancer.
Whether articles or personal experiences of our members, it is not a substitute for professional medical advice. 

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Active Surveillance Patients International · 188 Winchester Dr · East Stroudsburg, PA 18301 · USA

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