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PSA Update is Good
  1. #1
    Dan Schumacher Guest

    Default PSA Update is Good

    Latest test came back as <0.1, undetectable. Since Bethesda
    National Naval Medical and Walter Reed hospitals have merged they
    have standardized on the less sensitive test so I will probably
    never see another 0.05 like last April. Now I am just waiting
    for them to schedule the flap surgery to fix the fistula between
    the prostate and rectum. The fistula is large enough that the
    bladder can be seen from the rectum during a flex sigmoidoscopy.

    My radiation oncologist is totally astounded by all the side
    effects. He says that in the hundreds of cases he has handled he
    has never seen anything like what I have experienced. He
    reviewed the case book of daily treatments with me and said that
    with the exception of a few days where there was some air in the
    bladder, positional relationships were great.

    Regards, Dan


  2. #2
    I.P. Freely Guest

    Default Re: PSA Update is Good

    Since it is very important to undergo SRT before post-RP recurrent PSA
    hits 0.2, I was very glad I was getting ultrasensitive tests all along.
    That gave me a full year's heads-up before I broke 0.1 and provided a
    longer PSA curve to help validate the first measurement above 0.1. The
    stediness with which my PSA rose from >0.002 to about 0.100 lent great
    credibility to that first "detectable" reading, so I was ready for it.

    I do not recommend ultrasensitive testing to worriers. Its fluctuations
    would drive them nuts.

    Your RT morbidity experience will go into my SRT poll, for two reasons:
    how bad it *can* get, and the fact that your case is an extreme. Alas,
    fistulas aren't all that rare; yours just sounds severe. I never cease
    to be amazed how many studies blow bad SEs off as inconsequential, or at
    least just part of the game not worth considering in the decision process.

    I.P.

    Dan Schumacher wrote:
    > Latest test came back as <0.1, undetectable. Since Bethesda National
    > Naval Medical and Walter Reed hospitals have merged they have
    > standardized on the less sensitive test so I will probably never see
    > another 0.05 like last April. Now I am just waiting for them to schedule
    > the flap surgery to fix the fistula between the prostate and rectum. The
    > fistula is large enough that the bladder can be seen from the rectum
    > during a flex sigmoidoscopy.
    >
    > My radiation oncologist is totally astounded by all the side effects. He
    > says that in the hundreds of cases he has handled he has never seen
    > anything like what I have experienced. He reviewed the case book of
    > daily treatments with me and said that with the exception of a few days
    > where there was some air in the bladder, positional relationships were
    > great.


    --
    I.P.
    Oct 1, 2011 update:
    PSAs something like 2, 4, 6, 8 from 2000-2004.
    PCP woke up and suggested a biopsy at PSA = 8.8.
    (onc says that PCP may have signed my death warrant)
    Gleason 4+4=8 PC.
    Scan for PC mets negative.
    Consulted several PC specialists in quick succession.
    RRP in VA hospital Oct 2004.
    Post-op pathology: SVI, no nodes, no mets, negative margins. Oncologists
    said behind my back that I'd be back within three years.
    Prescribed ADT Just In Case. Rejected until I see a better incentive,
    including a greater therapeutic ratio and some indication I may have
    cancer.
    2005-2010: PSA bounced around randomly and meaninglessly between 0.053
    and <0.002.
    In the 7th year post-op, 2011, yet another rising trend topped 0.100.
    PC again ... definitely.
    Next PSA leaves no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves much doubt.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; will consult rad onc ASAP.

  3. #3
    Alan Meyer Guest

    Default Re: PSA Update is Good

    On 10/13/2011 9:57 AM, Dan Schumacher wrote:

    > My radiation oncologist is totally astounded by all the side effects. He
    > says that in the hundreds of cases he has handled he has never seen
    > anything like what I have experienced. He reviewed the case book of
    > daily treatments with me and said that with the exception of a few days
    > where there was some air in the bladder, positional relationships were
    > great.


    That reminds me of a knee operation I had that left me limping and in
    some pain for 10 years. Before the operation the surgeon told me, "I
    have performed 300 of these operations. 90% of the patients have
    improved and none have ever been left worse off than they were."

    I've always wanted to know what he told the patients after me.

    It seems like all medical treatments involve some degree of luck, and
    some doctors seem to be consistently "luckier" than others.

    Alan

  4. #4
    I.P. Freely Guest

    Default Re: PSA Update is Good

    Alan Meyer wrote:
    >
    > That reminds me of a knee operation I had that left me limping and in
    > some pain for 10 years. Before the operation the surgeon told me, "I
    > have performed 300 of these operations. 90% of the patients have
    > improved and none have ever been left worse off than they were."
    >
    > I've always wanted to know what he told the patients after me.


    My pro sports team physician insisted on scoping and fixing my knee,
    that it would really help it, so I scheduled the operation. During the
    few days' wait, I asked three other orthopods. Every one said it was far
    more likely to harm than help. I canceled. That was > 15 years ago, and
    even with subsequent unrelated injures my knees are better now than then.

    But in that vein, I'm still reading studies by the score and even poring
    over modern medical school uro oncology textbooks written by many of the
    biggest names in the field, and I still can't find anything to back up
    my rad onc's claims that SRT's morbidity/SE rate is only a few percent
    and that I will have mets within 4 years if I don't undergo SRT now.
    Hundreds of studies point so far to 8 years to mets w/o SRT and 30-50%
    late (long term) morbidity with it. For example, a 2010 study by
    Ivenger, titled "Toxicity Associated With Postoperative Radiation
    Therapy for Prostate Cancer", called 27% GI (bowel) morbidity and 36% GU
    (urinary) morbidity -- to the point the patients had to spend the rest
    of their lives very near a toilet and still often not get there in time
    -- “LIMITED” toxicity.

    And while my local rad onc says pts at high risk of distant mets (e.g.,
    SVI, Gleason 8, negative margins) are looking a 75% "cure rate", I
    can't find much better than 18% in any studies, even searching PubMed
    with only two key words: Michalski (the rad onc's cited source) and
    radiation.

    Forget yacht payments; the more I read, the more I think too many of
    these guys have IGRT machines to pay for and only one source of revenue
    for them. I'm getting simulated next week (the definitive SRT CT
    scanning and all the computer analysis to totally define their 33-day
    IMRT treatment plan to the nearest millimeter and Gy), but what I REALLY
    want to learn from that is their rad physicist/ rad dosimetrist/ IMRT
    computer "dose-volume histogram" assessment of how well they can hit
    *MY* fossa and lymph fields while sparing *MY* organs. That gives them a
    very personalized idea of *MY* likelihood of toxicities. Only then will
    we discuss actual treatment.

    If that process says I'm not an SRT candidate because of my prior colon
    surgery (a likely call), we're done and I fuhgeddabout my cancer until
    it actually impacts my life. If simulation says I'm good for SRT, I plan
    to query a dozen of the country's top PC centers of excellence for their
    opinion, given my numbers. I'm not going lightly into a high likelihood
    of destroying my lifestyle over a freaking PSA reading.

    I.P.

  5. #5
    I.P. Freely Guest

    Default Re: PSA Update is Good

    I.P. Freely mistyped:
    > a 2010 study by
    > Ivenger, titled "Toxicity Associated With Postoperative Radiation
    > Therapy for Prostate Cancer"


    That should be "Iyengar".

    Sheesh.

    --
    I.P.
    Oct 1, 2011 update:
    PSAs something like 2, 4, 6, 8 from 2000-2004.
    PCP woke up and suggested a biopsy at PSA = 8.8.
    (onc says that PCP may have signed my death warrant)
    Gleason 4+4=8 PC.
    Scan for PC mets negative.
    Consulted several PC specialists in quick succession.
    RRP in VA hospital Oct 2004.
    Post-op pathology: SVI, no nodes, no mets, negative margins. Oncologists
    said behind my back that I'd be back within three years.
    Prescribed ADT Just In Case. Rejected until I see a better incentive,
    including a greater therapeutic ratio and some indication I may have
    cancer.
    2005-2010: PSA bounced around randomly and meaninglessly between 0.053
    and <0.002.
    In the 7th year post-op, 2011, yet another rising trend topped 0.100.
    PC again ... definitely.
    Next PSA leaves no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves much doubt.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; will consult rad onc ASAP.

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