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Recommendations for "Newbies"

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  • Fuller Jones
    Recommendations for the Newly Diagnosed Prostate Cancer Patient 1. Do Not Panic! Many of us have been down this road before, and there is much to learn
    Message 1 of 2 , Aug 1, 2008
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      Recommendations for the "Newly Diagnosed" Prostate Cancer Patient

      1. Do Not Panic! Many of us have been down this road before, and
      there is much to learn before you choose the solution "best for you."
      You have had this thing longer than you think, and taking the time to
      do the proper investigation into your options will not hurt. Since
      you have posted on the Internet, you obviously have the means to do
      most of the research that you need to do. There is a wealth of
      knowledge and experience for you to draw on.

      2. Do Not Accept the First Recommendation From the Urologist! (Or
      any other "first" recommendation) Get second, (or more) opinions from
      experts in other specialties. Depending on your Gleason score, you
      have time to figure this thing out! Gleason of 6 or less, take your
      time and be thorough; Gleason 7 and up, you need to do something
      sooner than later, but remember that it "is not going to kill you
      tomorrow," so you still have time to do a good job of fact gathering.
      Your PSA value enters into this equation also. This is the time to
      learn and thoroughly examine ALL your options, because whatever you
      choose, you will live with the consequences the rest of your days.

      3. I recommend that you also join "YANA" (You Are Not Alone")
      http://www.yananow.net/
      Explore it. (My story is on YANA, under Mentor Experiences/Proton
      Beam). Study this site carefully; the author, Terry Herbert, is "One
      of Us."

      4. Consider Proton Beam Radiation Therapy (PBRT), which is only
      available at five "Centers of Excellence" in the U. S. This is the
      ONLY treatment (other than "Watchful Waiting" which of course has no
      side effects) that has the least amount of side effects (besides
      continued potential tumor growth), with at least comparable results to
      all other options. Usually you will not hear of this option from
      other doctors or specialists!

      Do not allow the fact that the doctor did not mention it prevent you
      from considering this option along with the others! At the very least,
      study the records about PBRT and if possible, visit one of the centers
      for a consultation.

      Disadvantages:
      Nine weeks at one of only five centers that offer it.
      High cost (Medicare and most insurance does cover it).

      Full disclosure: I believe that PBRT results in the best chance for
      improved "Quality of Life" during and following treatment, and
      consider myself a "Proton Beam Advocate!"
      I completed my PBRT in March of 2007.

      5. Study the disease and the various treatments. Spend enough time to
      start to understand what the treatments are and what potential side
      effects and results are. Becoming an "informed, empowered patient" is
      critical to how you proceed on this life-long journey. Different folks
      take various amounts of time to accomplish this. In my case it took
      me about three months before I realized that I was becoming
      knowledgeable, and to be comfortable in understanding what was going
      on. It was only then that I realized that I had to make the treatment
      decisions myself, not relying primarily on various medical
      specialists. And I am still learning.

      6. Go here: and read Aubrey Pilgrims work:
      http://www.cancer.prostate-help.org/capilgr.htm

      Whatever method you choose for your treatment, you should be
      comfortable with it.
      Be happy that you made the choice, based on your personal situation.
      This is many times better than accepting the recommendation of the
      diagnosing specialist, then later wondering why you did not do your
      "due diligence" and make your own decision!
      Whatever method you choose, rest assured that the outcome, with
      experienced surgeons or other specialists, is approximately the same
      for most modalities. The major differences in the outcomes may be in
      "quality of life" issues, which may or may not happen in every case.
      For me, these were the main drivers in my decision to receive proton
      beam therapy.

      Fuller
    • Fuller
      Recommendations for the Newly Diagnosed Prostate Cancer Patient – Fuller Jones 1. Do Not Panic! Many of us have been down this road before, and
      Message 2 of 2 , Feb 14, 2012
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        Recommendations for the "Newly Diagnosed" Prostate Cancer Patient – Fuller Jones

        1. Do Not Panic! Many of us have been down this road before, and there is much to learn before you choose the solution "best for you." You have had this thing longer than you think, and taking the time to do the proper investigation into your options will not hurt. Since you have posted on the Internet, you obviously have the means to do most of the research that you need to do. There is a wealth of knowledge and experience for you to draw on.

        2. Do Not Accept the First Recommendation From the Urologist! (Or any other "first" recommendation) Get second, (or more) opinions from experts in other specialties. Depending on your Gleason score, you have time to figure this thing out! Gleason of 6 or less, take your time and be thorough; Gleason 7 and up, you need to do something sooner than later, but remember that it "is not going to kill you tomorrow," so you still have time to do a good job of fact gathering. Your PSA value enters into this equation also. This is the time to learn and thoroughly examine ALL your options, because whatever you choose, you will live with the consequences the rest of your days.

        3. I recommend that you also join "YANA" (You Are Not Alone")
        http://www.yananow.org/
        Explore it. (My story is on YANA, under Mentor Experiences/Proton Beam). Study this site carefully; the author, Terry Herbert, is "One of Us."

        4. Consider Proton Beam Radiation Therapy (PBRT), which is only available at [NOW NINE!} "Centers of Excellence" in the U. S. This is the ONLY treatment (other than "Watchful Waiting" which of course has no side effects) that has the least amount of side effects, with at least comparable results to all other options. Usually you will not hear of this option from other doctors or specialists!

        Do not allow the fact that the doctor did not mention it prevent you from considering this option along with the others! At the very least, study the records about PBRT and if possible, visit one of the centers for a consultation.
        Disadvantages:
        Nine weeks at one of only five centers that offer it.
        High cost (Medicare and most insurance does cover it).

        Full disclosure: I believe that PBRT results in the best chance for improved "Quality of Life" during and following treatment, and consider myself a "Proton Beam Advocate!"
        I completed my PBRT in March of 2007. [My Gleason was initially 4+4=8, PSA was 5; I had five months of Lupron in conjunction with the proton therapy; PSA now stable at 0.1 ng/mL]

        5. Get Bob Marckini's book, "You Can Beat Prostate Cancer …" and read it cover to cover BEFORE you visit your doctor again if possible.
        Order from Amazon or from Bob at www.protonbob.com . Visit his site!
        This recommendation is very important in terms of learning about proton therapy and prostate cancer.

        I have also written a book "Prostate Cancer Meets the Proton Beam," available on Amazon.com. Just Google "Fuller Jones Proton" for info.
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