Results 1 to 21 of 21
A friend diagnosed
  1. #1
    ---MIKE--- Guest

    Default A friend diagnosed

    An old friend called me yesterday to tell me he was diagnosed with PC
    about two months ago. He said his PSA was about 7 and he had had marker
    coils inserted for beam radiation which will start soon. He is about 82
    years old. He has spinal stenosis but still goes to a fitness center
    every day for a couple of miles on the treadmill plus long rides on an
    incumbent bike on nice days. Doesn't it seem foolish to go for
    aggressive treatment at his age?

    ---MIKE---

    In the White Mountains of New Hampshire
    (44� 15' N - Elevation 1580')


  2. #2
    Alan Meyer Guest

    Default Re: A friend diagnosed

    On 10/27/2011 7:35 AM, ---MIKE--- wrote:
    > An old friend called me yesterday to tell me he was diagnosed with PC
    > about two months ago. He said his PSA was about 7 and he had had marker
    > coils inserted for beam radiation which will start soon. He is about 82
    > years old. He has spinal stenosis but still goes to a fitness center
    > every day for a couple of miles on the treadmill plus long rides on an
    > incumbent bike on nice days. Doesn't it seem foolish to go for
    > aggressive treatment at his age?
    >
    > ---MIKE---
    >
    > In the White Mountains of New Hampshire
    > (44� 15' N - Elevation 1580')
    >


    I thought the current statistics show that 99% of men diagnosed early
    with low PSA values will still be alive in 10 years and most will still
    be alive in 15 years. But that may not hold true if his Gleason score
    was very high or if mets were detected (there are some prostate cancers
    that don't express high PSA but are dangerous.)

    I had imagined that in the UK, where I thought that doctors don't make
    extra money by treating people who don't need treatment, he might have
    been advised to just get regular PSA tests and only take action if the
    PSA started to really take off.

    Alan

  3. #3
    Sue Mullen Guest

    Default Re: A friend diagnosed



    On 10/27/2011 10:44 AM, Alan Meyer wrote:
    > On 10/27/2011 7:35 AM, ---MIKE--- wrote:
    >> An old friend called me yesterday to tell me he was diagnosed with PC
    >> about two months ago. He said his PSA was about 7 and he had had marker
    >> coils inserted for beam radiation which will start soon. He is about 82
    >> years old. He has spinal stenosis but still goes to a fitness center
    >> every day for a couple of miles on the treadmill plus long rides on an
    >> incumbent bike on nice days. Doesn't it seem foolish to go for
    >> aggressive treatment at his age?
    >>
    >> ---MIKE---
    >>
    >> In the White Mountains of New Hampshire
    >> (44� 15' N - Elevation 1580')
    >>

    >
    > I thought the current statistics show that 99% of men diagnosed early
    > with low PSA values will still be alive in 10 years and most will still
    > be alive in 15 years. But that may not hold true if his Gleason score
    > was very high or if mets were detected (there are some prostate cancers
    > that don't express high PSA but are dangerous.)
    >
    > I had imagined that in the UK, where I thought that doctors don't make
    > extra money by treating people who don't need treatment, he might have
    > been advised to just get regular PSA tests and only take action if the
    > PSA started to really take off.


    Alan, as you said his gleason score is very important in the decision
    making. Kevin's PSA was 7.9, no mets, but his gleason was 9 in all 12
    cores, so for him immediate treatment was critical. With Mike's friend
    the gleason and bone scan results would make a big difference in
    treatment decisions.

    sue

  4. #4
    I.P. Freely Guest

    Default Re: A friend diagnosed

    -MIKE--- wrote:
    > Doesn't it seem foolish to go for
    > aggressive treatment at his age?


    Much depends on his PSADT and PSAV (independently) and Gleason score.
    Then there's his familial longevity history.
    And his symptoms, if any.
    I would consider aggressive treatment at that age only under unusually
    threatening conditions and only with specific reasons to suspect his
    cancer is strictly local.


    --
    I.P.
    Oct 24, 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 left no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves significant doubt about SRT, virtually none about
    adjuvant ADT.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; awaiting outcome of initial SRT "simulation" ... the
    three-decimal-point analysis of SRT's expected therapeutic ratio for
    *my* body, *my* cancer, and *my* priorities.

  5. #5
    Gourd Dancer Guest

    Default Re: A friend diagnosed

    Even without knowing anything else about his cancer, it does not seem
    foolish to me.

    Gourd Dancer

    "---MIKE---" wrote in message
    news:[email protected]..

    An old friend called me yesterday to tell me he was diagnosed with PC
    about two months ago. He said his PSA was about 7 and he had had marker
    coils inserted for beam radiation which will start soon. He is about 82
    years old. He has spinal stenosis but still goes to a fitness center
    every day for a couple of miles on the treadmill plus long rides on an
    incumbent bike on nice days. Doesn't it seem foolish to go for
    aggressive treatment at his age?

    ---MIKE---

    In the White Mountains of New Hampshire
    (44� 15' N - Elevation 1580')


  6. #6
    I.P. Freely Guest

    Default Re: A friend diagnosed

    On 10/27/11 9:25 AM, Gourd Dancer wrote:
    > Even without knowing anything else about his cancer, it does not seem
    > foolish to me.


    The rationale for not taking aggressive action is that he may be likely
    to acquire or even die of unrelated causes before his PC even becomes
    noticeable. Also, if his cancer is not localized, RT will not cure it.
    In either case, the temporary and permanent morbidities (SEs) of the RT
    would be for naught. Knowing more about his cancer numbers -- Gleason,
    stage, PSA, PSAV, PSADT, etc. -- and existing GI/GU status would provide
    significant prognostic information about his likelihood of benefits and
    SEs.

  7. #7
    Gourd Dancer Guest

    Default Re: A friend diagnosed

    All well and good, but that does not render him foolish either way he
    choses.

    "I.P. Freely" wrote in message news:j8c46q$s7i$[email protected]..

    On 10/27/11 9:25 AM, Gourd Dancer wrote:
    > Even without knowing anything else about his cancer, it does not seem
    > foolish to me.


    The rationale for not taking aggressive action is that he may be likely
    to acquire or even die of unrelated causes before his PC even becomes
    noticeable. Also, if his cancer is not localized, RT will not cure it.
    In either case, the temporary and permanent morbidities (SEs) of the RT
    would be for naught. Knowing more about his cancer numbers -- Gleason,
    stage, PSA, PSAV, PSADT, etc. -- and existing GI/GU status would provide
    significant prognostic information about his likelihood of benefits and
    SEs.


  8. #8
    Alan Meyer Guest

    Default Re: A friend diagnosed

    On 10/27/2011 11:50 AM, Sue Mullen wrote:
    >...
    > Alan, as you said his gleason score is very important in the decision
    > making. Kevin's PSA was 7.9, no mets, but his gleason was 9 in all 12
    > cores, so for him immediate treatment was critical. With Mike's friend
    > the gleason and bone scan results would make a big difference in
    > treatment decisions.
    >
    > sue


    Agreed. There are other indicators of aggressive disease besides PSA.
    Gleason score, number of positive cores, etc., can be much more
    important than PSA.

    Alan

  9. #9
    colin Guest

    Default Re: A friend diagnosed


    Alan here in the uk, it seems if there is a treatment you get it, or
    you might complain, they seem to have a flow chart, the consultants
    are the top of the tree, they have a clinic, with less worthy people
    below them, some of these are very good, others use the flow chart,
    in the four years I have been going to the clinic I have never seen
    the top man, however when first diagnosed and using private health
    care, I did see him, and another consultent, they both advised against
    radiotherapy, one because of my high psa, the other because of the the
    psa, and my diverticulitis,after 2 years adt, the lymph nodes appeared
    clear, and the prostate small, I then went to the consultents clinic
    the person I seen, advised radiotheraphy saying I could be cured,
    I spoke to my general practitioner, who then wrote to this person,
    the the reply was small chance of a cure but worth a go.
    my advise would be,if in doubt pay to see a consultent.


    On Thu, 27 Oct 2011 10:44:30 -0400, Alan Meyer <[email protected]>
    wrote:

    >On 10/27/2011 7:35 AM, ---MIKE--- wrote:
    >> An old friend called me yesterday to tell me he was diagnosed with PC
    >> about two months ago. He said his PSA was about 7 and he had had marker
    >> coils inserted for beam radiation which will start soon. He is about 82
    >> years old. He has spinal stenosis but still goes to a fitness center
    >> every day for a couple of miles on the treadmill plus long rides on an
    >> incumbent bike on nice days. Doesn't it seem foolish to go for
    >> aggressive treatment at his age?
    >>
    >> ---MIKE---
    >>
    >> In the White Mountains of New Hampshire
    >> (44� 15' N - Elevation 1580')
    >>

    >
    >I thought the current statistics show that 99% of men diagnosed early
    >with low PSA values will still be alive in 10 years and most will still
    >be alive in 15 years. But that may not hold true if his Gleason score
    >was very high or if mets were detected (there are some prostate cancers
    >that don't express high PSA but are dangerous.)
    >
    >I had imagined that in the UK, where I thought that doctors don't make
    >extra money by treating people who don't need treatment, he might have
    >been advised to just get regular PSA tests and only take action if the
    >PSA started to really take off.
    >
    > Alan


  10. #10
    I.P. Freely Guest

    Default Re: A friend diagnosed

    Alan Meyer wrote:
    > On 10/27/2011 11:50 AM, Sue Mullen wrote:
    >> ...
    >> Alan, as you said his gleason score is very important in the decision
    >> making. Kevin's PSA was 7.9, no mets, but his gleason was 9 in all 12
    >> cores, so for him immediate treatment was critical. With Mike's friend
    >> the gleason and bone scan results would make a big difference in
    >> treatment decisions.
    >>
    >> sue

    >
    > Agreed. There are other indicators of aggressive disease besides PSA.
    > Gleason score, number of positive cores, etc., can be much more
    > important than PSA.


    PSAV and PSADT are especially vital indicators. but he really needs to
    think long and hard about the threat his cancer poses at his age, the
    likelihood his cancer is confined to his prostate, and the high
    likelihood that the main effect of RT as his age may be GI and GU
    morbidities which could confine him to home. Is he ready to accept that
    .... or would he just go to the gym anyway and risk explosive expulsion
    from any of his three relevant orifices? It's plain and simple: most
    studies and thus most doctors mislead us about the odds of that.

    I.P.

  11. #11
    I.P. Freely Guest

    Default Re: A friend diagnosed

    colin wrote:
    >
    > if in doubt pay to see a consultent.
    >


    A recent acquaintance consulted Strum throughout his years of treatment,
    observation, and secondary treatment, paying by the hour. Strum accepts
    only cash, so that was one big blank check. I thought lawyers charged
    big fees!

    I'm prepared to consult a couple of premiere oncs and their facilities
    soon if my local rad onc says I'm even a candidate for SRT. I'm guessing
    my insurers will pay for a second opinion, but not for a third. But
    considering the extra bowel risks radiation poses over surgery, I'd
    suggest that a first-rate opinion would be very valuable.

    --
    I.P.
    Oct 24, 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 left no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves significant doubt about SRT, virtually none about
    adjuvant ADT.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; awaiting outcome of initial SRT "simulation" ... the
    three-decimal-point analysis of SRT's expected therapeutic ratio for
    *my* body, *my* cancer, and *my* priorities.

  12. #12
    Alan Meyer Guest

    Default Re: A friend diagnosed

    On 10/31/2011 08:55 AM, I.P. Freely wrote:

    > ... and the high
    > likelihood that the main effect of RT as his age may be GI and GU
    > morbidities which could confine him to home. Is he ready to accept that
    > ... or would he just go to the gym anyway and risk explosive expulsion
    > from any of his three relevant orifices? It's plain and simple: most
    > studies and thus most doctors mislead us about the odds of that.
    >
    > I.P.


    I.P.,

    I think this is a legitimate concern, but you may be overstating it by
    characterizing it as "high likelihood".

    I did a Pubmed search for fecal incontinence and prostate radiation.
    Most of what I found was nonspecific, but this article gave specific
    numbers:

    http://www.ncbi.nlm.nih.gov/pubmed/18252677

    Specifically: "... Bowel urgency occurred more often with radiation (3%)
    or androgen deprivation (3%) than with radical prostatectomy (1%)"

    Another possibly relevant article didn't give any statistics but did
    analyze causes of bowel incontinence. Prostate radiation was a cause.
    Other important causes were age and cognitive ability.

    It may be noteworthy that men receiving radiation treatment are
    typically older than men receiving surgery, and that some are also
    receiving androgen deprivation.

    When a certain side effect only occurs 3% of the time, I can't help
    wondering if there are some sloppy radiation oncologists who account for
    a significant fraction of the cases and other rad oncs who achieve much
    better results.

    Alan

  13. #13
    I.P. Freely Guest

    Default Re: A friend diagnosed

    Alan Meyer wrote:
    > On 10/31/2011 08:55 AM, I.P. Freely wrote:
    >
    >> ... and the high
    >> likelihood that the main effect of RT as his age may be GI and GU
    >> morbidities which could confine him to home. Is he ready to accept that
    >> ... or would he just go to the gym anyway and risk explosive expulsion
    >> from any of his three relevant orifices? It's plain and simple: most
    >> studies and thus most doctors mislead us about the odds of that.


    > I think this is a legitimate concern, but you may be overstating it by
    > characterizing it as "high likelihood".


    > I did a Pubmed search for fecal incontinence and prostate radiation.
    > Most of what I found was nonspecific, but this article gave specific
    > numbers:
    >
    > http://www.ncbi.nlm.nih.gov/pubmed/18252677
    >
    > Specifically: "... Bowel urgency occurred more often with radiation (3%)
    > or androgen deprivation (3%) than with radical prostatectomy (1%)"


    According to hundreds of studies I've condensed onto 100 dense pages so
    far, those figures represent the RTOG Grade 3 or 4 morbidity tally ...
    i.e., you're in hospitals much of your remaining time.
    1. Bowel urgency is just one of many facets of rectal radiation
    proctitis, which also includes bleeding, diarrhea, burning, pain,
    mucous, et.al.
    2. There are 5 grades of each of those, and most studies ignore grades 1
    and 2, both of which essentially dictate living near a toilet.
    3. RTOG Grade 1 morbidities look like this:
    • Nauseous, but can eat adequately.
    • Daily vomiting.
    • Diarrhea 2-3/day more than before RT.
    • Stomatitis including mild ulcers or soreness.
    • The likelihood of these runs from about 25-60% in the studies that
    address Grade 1 at all. Modern techniques increase the likelihood by a
    factor of 2 to 20 (that's a 2,000% toxicity increase in the latter
    case!) over the old non-conformal techniques, probably (according to
    studies) because rad oncs feel safe cranking up the Grays on their new
    toys.
    4. Grade 2, also totally ignored by most studies, looks like this:
    • Chronic nausea significantly decreases food intake.
    • Vomiting 2-5 times a day
    • Diarrhea day & night
    • Stomach pain, but can eat sufficient nourishment to survive.
    The likelihoods of these runs 10-40% in different studies, and that
    includes the old non-conformal RT technology. Modern conformal
    technology increases their likelihood very significantly, according to
    many studies, which, IMO, is one reason most studies ignore these
    piddling little nuisances. A clinic that has bought the latest
    technology has to pay for it somehow, and scaring off pts doesn't do that.

    I went to the original study your abstract addressed. Some comments from it:
    • "Investigators’ definitions of adverse events and criteria
    to define event severity varied widely. ... The AUA data contained 24
    predefined different complications ... including 112 definitions
    of incontinence, 79 of erectile dysfunction, 203 of bladder
    complications, 87 of bowel, and 336 "other" side effects definitions."
    • The study expressed a "Low" confidence level in its only specific IMRT
    toxicity grading, citing Zelefsky's "grade 2 acute gastrointestinal
    toxicity, 4%; rectal bleeding, 2% to 10%; grade 2 acute urinary
    toxicity, 30%; late toxicity, <20%". The problems with those numbers are:
    1) acute (during RT) morbidities correlate very strongly with late
    (permanent) morbidities.
    2) 20-30% is pretty serious GU toxicity likelihood.
    3) RT GU morbidities tend towards stricture (with the possibility of
    further surgeries or permanent catheterization) or urge incontinence
    (diapers and overflow thereof).
    4) That 20-30% is just Grade 2 likelihoods, and Grade 1 is often several
    times the Grade 2 likelihood. Thompson reported from SWOG 8794 data that
    fully 25% of men couldn’t pee (total stricture) or couldn’t stop peeing
    (free flow) after RP-adjuvant RT (I didn't chase down the details
    because I'm years past the "adjuvant" point.)

    So I went to the source of the numbers from your study, Zelefzky's
    "Long-Term Outcome of High Dose Intensity Modulated Radiation Therapy
    for Patients With Clinically Localized Prostate Cancer",
    and found these comments:
    • "... dose levels of at least 78 Gy, and likely even higher, are
    necessary to achieve optimal tumor control outcomes. One of the
    significant limitations of high dose radiotherapy delivery has been the
    potential for an increased risk of long-term morbidity"
    • "In a report of the outcomes of the phase III randomized trial
    from MD Anderson Hospital, among those patients who received the 78 Gy
    dose, the 5-year incidence of grade 2 to 3 rectal toxicity was 25%."
    [And that still ignores Grade 1]

    Add to this scores of studies with comparable or (often much) worse
    morbidity likelihoods, and I think you can see now how important it is
    for us to take rad oncs' toxicity estimates as pure BS unless daily
    vomiting and diarrhea are relatively unimportant to us. And that goes
    double or triple when considering salvage rather than primary RT,
    because the odds SRT will cure us drop quite low if we have any
    high-risk factors.

    > Another possibly relevant article didn't give any statistics but did
    > analyze causes of bowel incontinence. Prostate radiation was a cause.
    > Other important causes were age and cognitive ability.


    Even so, the RTOG toxicity scales' frequencies and degrees of nausea,
    vomiting, diarrhea, etc. are *in addition to* pre-RT levels.
    >
    > It may be noteworthy that men receiving radiation treatment are
    > typically older than men receiving surgery, and that some are also
    > receiving androgen deprivation.


    Adjuvant ADT adds a whole 'nuther level and variety of toxicity to RT in
    general, and adds, on average, very little if any benefit to SRT.

    > When a certain side effect only occurs 3% of the time, I can't help
    > wondering if there are some sloppy radiation oncologists who account for
    > a significant fraction of the cases and other rad oncs who achieve much
    > better results.


    Many of these studies reporting 20-30 ... even 60% likelihoods of Grade
    ≥ 1 toxicity are from centers we've all heard of, like MD Anderson,
    Mayo, Fox Chase, MSK, Cleveland, Hopkins, etc. I'm beginning to wonder
    if the sloppy rad oncs are the ones who kill or maim, rather than just
    achieving marginal results or a high rate of Grade 1 and 2 toxicity. I
    try to ignore the outlying Grade 4 and 5 (death) horror cases, just as I
    ignore idyllic cases like my new 78-yo acquaintance whose T never came
    back after SRT-neoadjuvant ADT ... *but who has zero side effects*
    beyond impotence and a couple of pads, not even fatigue! Scholz says
    that's virtually impossible.

    You aren't going to believe some of the findings I'll post here
    regarding SRT's meager benefits and high toxicity rates once I condense
    my notes from > 100 pages to just 2 or 3 ... and I'm doing my very best
    to remain objective because my life and the quality thereof depend on
    it. And to think studies of studies' toxicity reports conclude or
    surmise that toxicity is underreported.

    --
    I.P.
    Oct 24, 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 left no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves significant doubt about SRT, virtually none about
    adjuvant ADT.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; awaiting outcome of initial SRT "simulation" ... the
    three-decimal-point analysis of SRT's expected therapeutic ratio for
    *my* body, *my* cancer, and *my* priorities.

  14. #14
    I.P. Freely Guest

    Default Re: A friend diagnosed

    Alan Meyer wrote
    > I think this is a legitimate concern, but you may be overstating it by
    > characterizing it as "high likelihood".


    And it just keeps on coming.
    Studies based on the ASTRO Emerging Technology Committee's study of
    Stereotactic Body Radiotherapy (SBRT) For Primary Management of
    Early-Stage, Low-Intermediate Risk Prostate Cancer report these findings
    from these clinics:

    At the Cleveland Clinic, acute Grade ≥1 toxicity rates were 49% GI and
    67% GU. The late toxicity rates were 10% in both GI and GU. They called
    those rates “acceptable”. [That drop from acute to late is encouraging,
    but many studies show otherwise.]

    At Fox Chase, Grade ≥ 2 GU rates maxed at 48% and dropped to 10% late.
    Their Grade ≥ 2 rate was 13% … the lowest reported of all the series,
    which ranged from 14%-52% and averaged 30%. [Remember, Grade 1’s
    normally far outstrip Grade 2’s.]

    Virginia Mason Medical Center, Seattle, reported acute toxicity rates of
    ≥ 49% Grade 1-3 GU and 39% GI. Late toxicity grade 1 or 2 rates were 45%
    GU and 37% GI. They called those incidences “little acute or late
    toxicity”.

    Either these people -- by the thousands -- have never been nauseous,
    vomited, had diarrhea, had an ulcer in their stomach or rectum, lost
    vital weight because they couldn't eat adequately for months to years
    because of the pain (been there with IBS; it got REALLY old), totally
    pissed their pants in a restaurant, worn catheters for weeks to years,
    or gotten raging cases of anal diaper rash ... or we're being lied to.

    I.P.

  15. #15
    ---MIKE--- Guest

    Default Re: A friend diagnosed

    I asked my friend about his gleason score and how many shots were
    positive but he had no idea. I think he just panicked and decided to go
    for the radiation. I think he will regret it later.

    ---MIKE---

    In the White Mountains of New Hampshire
    (44� 15' N - Elevation 1580')


  16. #16
    I.P. Freely Guest

    Default Re: A friend diagnosed

    ---MIKE--- wrote:
    > I asked my friend about his gleason score and how many shots were
    > positive but he had no idea. I think he just panicked and decided to go
    > for the radiation. I think he will regret it later.


    I just got back from my second hour of rad onc consultation, this one
    presenting my radiation simulation analysis, which lays out my SRT
    treatment plan on slices of CT scan. If I hadn't grilled both rad oncs
    in relevant detail based on my research, I almost believe all they would
    have told me spontaneously was something like this:

    "Your only remaining hope for a cure is SRT. Its cure likelihood is
    about 75% (yeah, I know; they mean .75). The likelihood of various side
    effects, including several bowel and urinary symptoms, is 1%-5%. You
    will get 66 Gys over 35 days, and we'll take great care of you."

    Their two consultation manhours were spent answering and/or dodging my
    questions; denying the findings of huge, peer-reviewed, published,
    long-followup studies from names and places we've all heard of; and in
    some cases just lying to me (change that 75% to 18% and change that
    1%-5% to 30%-60%, for example). Two things I did not see were 1) a
    direct hard sell and 2) the slightest interest in my QOL concerns.
    FINALLY, one of the rad oncs said I or they could and probably should
    stop the process altogether if my SEs got onerous, because that would
    indicate looming damage due to greater-then-average sensitivity to
    radiation. Even then, they would not concede that a significant
    likelihood of having to near a toilet the rest of my life is a hardship
    worth considering.

    Please try to get your friend to read a PC book. He's not being
    rational. Even if RT is ultimately his best choice, it's far better made
    by an informed patient than by a rad onc with a linear accelerator to
    pay for and a pronounced treatment bias.

    --
    I.P.
    Oct 24, 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 left no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves significant doubt about SRT, virtually none about
    adjuvant ADT.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; awaiting outcome of initial SRT "simulation" ... the
    three-decimal-point analysis of SRT's expected therapeutic ratio for
    *my* body, *my* cancer, and *my* priorities.

  17. #17
    Steve Kramer Guest

    Default Re: A friend diagnosed

    If I recall correctly, don’t you have a higher risk due to some previous
    radiation? It's been a long time, but I seem to recollect that in the
    bowels of my mind.



    PSA OCT 2000 @ 46
    Biopsy NOV 2000 3+4=7, T2c
    RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
    PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
    EBRT MAY - JULY 2002 @ 47
    PSA .34 .22 .15 .21 .32 PSAD 0.56 years
    Lupron started JULY 2003 @ 48
    PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
    Casodex added JUL 2006 @ 51
    PSA <0.1 since Next draw AUG 2012 @ 57
    Illegitimati non carborundum




    "I.P. Freely" wrote in message news:j8povc$b9i$[email protected]..

    ---MIKE--- wrote:
    > I asked my friend about his gleason score and how many shots were
    > positive but he had no idea. I think he just panicked and decided to go
    > for the radiation. I think he will regret it later.


    I just got back from my second hour of rad onc consultation, this one
    presenting my radiation simulation analysis, which lays out my SRT
    treatment plan on slices of CT scan. If I hadn't grilled both rad oncs
    in relevant detail based on my research, I almost believe all they would
    have told me spontaneously was something like this:

    "Your only remaining hope for a cure is SRT. Its cure likelihood is
    about 75% (yeah, I know; they mean .75). The likelihood of various side
    effects, including several bowel and urinary symptoms, is 1%-5%. You
    will get 66 Gys over 35 days, and we'll take great care of you."

    Their two consultation manhours were spent answering and/or dodging my
    questions; denying the findings of huge, peer-reviewed, published,
    long-followup studies from names and places we've all heard of; and in
    some cases just lying to me (change that 75% to 18% and change that
    1%-5% to 30%-60%, for example). Two things I did not see were 1) a
    direct hard sell and 2) the slightest interest in my QOL concerns.
    FINALLY, one of the rad oncs said I or they could and probably should
    stop the process altogether if my SEs got onerous, because that would
    indicate looming damage due to greater-then-average sensitivity to
    radiation. Even then, they would not concede that a significant
    likelihood of having to near a toilet the rest of my life is a hardship
    worth considering.

    Please try to get your friend to read a PC book. He's not being
    rational. Even if RT is ultimately his best choice, it's far better made
    by an informed patient than by a rad onc with a linear accelerator to
    pay for and a pronounced treatment bias.

    --
    I.P.
    Oct 24, 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 left no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves significant doubt about SRT, virtually none about
    adjuvant ADT.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; awaiting outcome of initial SRT "simulation" ... the
    three-decimal-point analysis of SRT's expected therapeutic ratio for
    *my* body, *my* cancer, and *my* priorities.


  18. #18
    I.P. Freely Guest

    Default Re: A friend diagnosed

    On 11/4/2011 7:45 AM, Steve Kramer wrote:
    > If I recall correctly, don’t you have a higher risk due to some previous
    > radiation? It's been a long time, but I seem to recollect that in the
    > bowels of my mind.


    > "I.P. Freely" wrote ...



    If you're referring to me, no prior radiation here. My high risk factors
    are SVI, Gleason 8, pre-RRP PSAV > 2.0/yr, and negative margins. My
    primary toxicity extra-risk factors are previous abdominal surgery,
    lasting RRP morbidities (some incontinence and impotence), and lesser
    lingering effects of my colon resection. Those do not affect my toxicity
    likelihood profile quantitatively; they just leave less room for
    tolerable exacerbation.

    I.P.

  19. #19
    Steve Kramer Guest

    Default Re: A friend diagnosed

    Okay. For some reason I thought you had radiation for your other cancer.



    PSA OCT 2000 @ 46
    Biopsy NOV 2000 3+4=7, T2c
    RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
    PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
    EBRT MAY - JULY 2002 @ 47
    PSA .34 .22 .15 .21 .32 PSAD 0.56 years
    Lupron started JULY 2003 @ 48
    PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
    Casodex added JUL 2006 @ 51
    PSA <0.1 since Next draw AUG 2012 @ 57
    Illegitimati non carborundum




    "I.P. Freely" wrote in message newsg%sq.15952$[email protected]..

    On 11/4/2011 7:45 AM, Steve Kramer wrote:
    > If I recall correctly, don’t you have a higher risk due to some previous
    > radiation? It's been a long time, but I seem to recollect that in the
    > bowels of my mind.


    > "I.P. Freely" wrote ...



    If you're referring to me, no prior radiation here. My high risk factors
    are SVI, Gleason 8, pre-RRP PSAV > 2.0/yr, and negative margins. My
    primary toxicity extra-risk factors are previous abdominal surgery,
    lasting RRP morbidities (some incontinence and impotence), and lesser
    lingering effects of my colon resection. Those do not affect my toxicity
    likelihood profile quantitatively; they just leave less room for
    tolerable exacerbation.

    I.P.


  20. #20
    I.P. Freely Guest

    Default Re: A friend diagnosed

    No, two surgeons teamed up and gave me a twofer.

    I.P.

    Steve Kramer wrote:
    > Okay. For some reason I thought you had radiation for your other cancer.


  21. #21
    Vince Guest

    Default Re: A friend diagnosed

    On Fri, 04 Nov 2011 10:45:08 -0400, Steve Kramer wrote:

    > If I recall correctly, don’t you have a higher risk due to some previous
    > radiation? It's been a long time, but I seem to recollect that in the
    > bowels of my mind.
    >
    >


    You might be thinking of me Steve. I'd had prior radiation before and
    was asking you all about that on here prior to my decision to undergo SRT
    a few years ago.

    Vince
    --
    PSA 4.73 07/2000 Age 48
    Biopsy 07/2000 G7 (3+4)
    RRP 09/2000 Age 49 G7 (3+4), T2b Neg margins capsular penetration
    PSA < 0.1 for 14 months post op
    PSA .8 .8 .6 .8 04/2008 thru 12/2008
    IMRT 02/2009 - 04/2009, 38 treatments, 60.8 Gy total
    PSA .02 05/18/09
    PSA .01 09/22/09
    PSA <0.008 01/25/10, PSA Undetectable since
    Diagnosed with rectal Radiation Proctitis 10/2010

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28