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Medical Forum / Diseases and Disorders / Prostate Cancer / March 2006

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salvage radiation after RP

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fred - 18 Mar 2006 00:01 GMT
Here's my situation:

4/99                       PSA    1.58
10/01                     PSA    1.68
9/02        PSA     2.7
10/03        PSA     3.8
11/03        Positive biopsy for Gleasons 6 on left side. One Lupron shot
given.    Whole body bone scan and CT abdomen and pelvis scan
performed: all negative. Age at diagnosis 54.

12/ 2003     Radical Prostatectomy at the Cleveland Clinic. Pathology:
Gleasons 3+4 = 7, clear surgical margins, but extracapsular extension
established. Good recovery from surgery.
3/17/04      PSA    0.003
4/27/04    PSA    0.003
7/22/04    PSA    <0.1 (not 3rd generation test)
11/10/04    PSA    <0.1 (not 3rd generation test)
5/10/05    PSA    <0.1 (not 3rd generation test)
10/19/05    PSA    0.050
11/2/05    Bone and CT scan: both negative.
2/3/06    PSA    0.082

The 2 uros (both at Cleveland Clinic) that I have consulted
(independently) indicate they think PSA will keep on increasing, and
that I have/will have a recurrence. Both acknowledge that there are no
tests that will say for sure, but they both feel that I probably have a
local recurrence based on 1. Extracapsular extensions present (from
post-surgery pathology) 2. Low PSA after surgery and 3. Slow increase
in PSA post surgery. So they are recommending that I get one more PSA
soon and, if it shows a rise, do radiation now rather than later.

Met with rad onc today. Seems well trained, practice focused on
prostate cancer, personable. Uses Trilogy IGRT system, which all 3 docs
say is state of the art. Claims this system is so precise that SEs are
very tolerable and temporary. He says his record over 10 years is about
85% non-recurrence rate for guys with my history. Sure liked to hear
those numbers, but I heard those kind of numbers before RP too, and
here I am!

I'm inclined to take the numbers with a big grain of salt, but I'm
probably going to go ahead as suggested. One nagging question (from
lurking here over the last few months) is that this approach seems to
be different from the norm (which seems to be watchful waiting until
PSA gets to 0.2 to 0.4).

Any thoughts?

Fred
Steve Jordan - 18 Mar 2006 01:09 GMT
On March 17, fred wrote, in pertinent part:

(snip history)

> Met with rad onc today. Seems well trained, practice focused on prostate
> cancer, personable. Uses Trilogy IGRT system, which all 3 docs say is
[quoted text clipped - 10 lines]
>
> Any thoughts?

My thoughts, those of a patient not a medic, are that the proposed tx
appears to be reasonable.

Concerning waiting for a higher PSA score before starting tx, here's what
Strum has to say:

"There is NOWHERE in oncology where waiting for the tumor cell
population to increase (and to mutate) is in the better interests of the
patient."

Regards,

Steve J
Alan Meyer - 18 Mar 2006 03:44 GMT
> On March 17, fred wrote, in pertinent part:
>
[quoted text clipped - 28 lines]
>
> Steve J

I'm not a doctor and my advice isn't worth much, but I agree
with your doctors and with Steve.

_IF_ cancer is still present, and waiting for one more PSA test to
confirm it might well be justified, then radiating it as early as possible
would seem to provide the very best chance of a cure.

If you were 25 years older than you are you might wonder if the
cancer is going to grow fast enough to kill you.  But at your age
it seems more than possible that it will reach a life threatening
stage before you die of some other old age disease.  So treatment
would indeed seem warranted.

There have been studies, I don't remember a citation but you can
probably find them on Pubmed, that found that early salvage
radiation is more effective than later salvage radiation.

If the doctors really think you have a recurrence of the disease,
and it sounds like all three specialists think it's likely, then I think
you'd want to get the treatment.

There are a number of people in this newsgroup who have had
both RP and radiation.  I don't recall any of them saying that
the side effects of radiation were significantly worse for them
than they were for other radiation patients.

There will likely be side effects.  In my case (I just had radiation,
no surgery) the main one was difficulty urinating for about five
months.  There were also smaller ones.  It was very bearable.

Good luck.

   Alan
I.P. Freely - 18 Mar 2006 18:50 GMT
Alan Meyer quotes Strum:

>> "There is NOWHERE in oncology where waiting for the tumor cell
>> population to increase (and to mutate) is in the better interests of the
>> patient."

Just a reminder before we all jump on the roller coaster: Thousands of
pts, including many urologists, including Strum's PCRI partner Stolz,
disagree when one adds QOL to the picture.

I.P.
Bill - 18 Mar 2006 16:36 GMT
Fred, since you did not mention it specifically, I assume you did NOT
have seminal vesicle involvement? If you are not sure about that, you
need to be because SVI is a significant negative predictor of a durable
response to salvage RT. Otherwise, your pathology looks good for local
vs. systemic recurrence and "cure" w/ RT. However, much more PSA than
you have can be explained by benign sources. The statement that early
is better than late is well supported but, even at that, they are not
talking about .08 vs. .4 - those studies simply mean before .6 or even
up to 1.0 as rad-oncs seem to be saying these days. I know of no trial
that concluded that RT prior to .1 was better than .6.

My own thoughts on all of this are leaning toward thinking that all men
have PCa cells sooner or later but that normal immune systems zap them
out or at least keep them at bay for years. If the tumor is removed,
leaving only a few cells around, it may well be that a robust immune
system can keep them in check as they did for many years prior to Dx.
That is where diet, general health, exercise, state of mind, and some
specific supplements come into play. So, if you are a really healthy
person who rarely gets sick, you might give a total lifestyle assault a
chance.

The quote from Strum was in response to my questions to him about early
vs. late salvage HT. His mutation theory makes sense but it is not held
by the majority of uros and med-oncs.

Whatever you do, you have some time to study and reflect, and you are
favorably positioned for cure.

Bill Denton
RP 2/12/02
PSA .67
Memphis
Alan Meyer - 18 Mar 2006 17:42 GMT
> Fred, since you did not mention it specifically, I assume you did NOT
> have seminal vesicle involvement? If you are not sure about that, you
[quoted text clipped - 28 lines]
> PSA .67
> Memphis

Standard disclaimer here - I'm not a doctor or an expert in any way.

As I recall Bill, you are a guy who has had considerable success with
diet and lifestyle changes.  And you are not the only person on this
newsgroup who has.

There is always some risk with any invasive treatment.  Radiation is
invasive.  There is a risk of radiating something that shouldn't be
radiated and there is a small but apparently measurable increased
risk of developing other cancers some time in the future after
radiation.

So there is a lot of credibility to your position on this.

But, having said all that, I think I'd still be inclined towards getting
the radiation - IF AND ONLY IF the doctors are sure that there
really is a recurrence and that the slight PSA bump Fred has seen
so far is not a fluke of measurement.

My reasoning is that Fred is now only 56 or 57 years old.  He's
potentially got 20 - 30 years of life left.  That's a long time for
prostate cancer to develop.  Presumably, whatever ability his
body has to resist the cancer now will decrease with age.

If all that is true, he's likely going to have enough PSA rise
eventually to want radiation.  Better to get it now.  If there is
no study to show that it's better at .1 than 1.0, that may only
be because the studies haven't been done, not because it
isn't so.

As to your question about seminal vesical involvement, that
seems to me an excellent question that should be put to the
doctors.  If they suspect it, then maybe my position on this
should be modified.

Well, that's my inexpert two cents.

   Alan
Steve Jordan - 18 Mar 2006 18:50 GMT
On March 18, Alan Meyer replied to Bill, in pertinent part:
> As to your question about seminal vesical involvement, that
> seems to me an excellent question that should be put to the
> doctors.  If they suspect it, then maybe my position on this
> should be modified.
>  
This seems to be as good a point as any other to remind folks that
radiation therapy, specifically IMRT, is not necessarily confined only
to the gland (or the "bed"). It can also be programmed to treat the
seminal vesicles and pelvic lymph nodes, too.

That is what was done in October 2004 as my salvage tx after botched
cryotherapy. So far so good.

Regards,

Steve J
I.P. Freely - 18 Mar 2006 19:36 GMT
> there is a small but apparently measurable increased
> risk of developing other cancers some time in the future after
> radiation.

70% ain't small in my book. 80,000 SEER pts showed that the risk of
colon cancer attributed to RT (because the data were corrected for
cancer at sites definitely radiated, possibly radiated, and definitely
not radiated) increased by 70% compared to surgery alone, and their only
time constraint was a meager 5-year post-RT threshold.
("Gastroenterology", Vol 128, page 819, April 2005, as reported in the
2006 Johns Hopkins Prostate Disorders White Paper.)

Yup ... "They" say today's RT systems are far mo bettah that what the
SEER guys got in 1973-1994; maybe in another 5-10 years they can prove
it. The big question is how much better, especially considering that the
prostate is separated from the rectum by little more than the surgeon's
judgment or a deep breath or hiccup during radiation, maybe even just a
slight natural shift in the slimy meat they're trying to radiate. All
the beam accuracy in the world isn't going to correct for a tiny shift
in the meat relative to the pelvic markers.

My unrelated colon cancer cost me half my large intestine, but there's a
huge difference: I lost the upstream half, the "invisible" half, the
third decimal point, part of the water extraction system, the Jokers
from the deck. No bag, no leakage, no flames, no constraints, no hassles
beyond extra paperwork once or twice a week and some serious urgency if
I let my remaining three feet of colon fill up completely -- a rarity.

You lose your rectum, OTOH, and your whole world changes. It's something
to be aware of and to think about, even though it's obvious that early
is better than late IF THE ONLY CRITERION IS KILLING PC CELLS IN THE
RADIATED AREA.

I.P.
Claude - 18 Mar 2006 23:13 GMT
> > there is a small but apparently measurable increased
>> risk of developing other cancers some time in the future after
[quoted text clipped - 30 lines]
>
> I.P.

I.P.,

As someone who thoroughly researches and plans out treatment matters, what
is your plan if your PSA comes back detectable and starts accelerating?  It
sounds like you would not consider salvage radiation.  At age 68, I'm still
undetectable almost 4 years out from RP.  But I did not have clear margins
and had a Gleason of 3+4, and so I think about options as my 6 month test
nears.  You have given me cause to seriously question salvage radiation
should I start getting bad news.

Claude
I.P. Freely - 19 Mar 2006 01:00 GMT
> I.P.,
>
> As someone who thoroughly researches and plans out treatment matters, what
> is your plan if your PSA comes back detectable and starts accelerating?  

Mine is doing exactly that -- although only at the second decimal place
so far but "nice" and linear -- after 12 and then 15 months post-op.

> It sounds like you would not consider salvage radiation.  

Oh, I'm considering it already, at it seems to be the post-RP tx of
choice (having changed from ADT in just the past year for some reason I
haven't figured out yet). But by "considering", I mean researching and
evaluating, not favoring or disfavoring. And since I won't reach the
magical 0.2 until Oct 29 (the hypothetical, even facetious,
extrapolation of my present supersensitive doubling time), I can wait
until Oct to do the SERIOUS research and until Jan 29 (my facetious 0.4
projection date) to make a decision. I'll be more  motivated to research
it at the 0.2 point, and there may be new information available by then.

> At age 68, I'm still
> undetectable almost 4 years out from RP.  But I did not have clear margins
> and had a Gleason of 3+4, and so I think about options as my 6 month test
> nears.  You have given me cause to seriously question salvage radiation
> should I start getting bad news.

Good; we should all "seriously question" ANY treatment, from WW to
surgery at Johns Hopkins by God (I'd want to know whether she remembers
that faux pax back in '61). I had clear margins, but was G8 and had SVI
and my last two supersensitive PSAs were beginning to show, so I'm
fairly likely to die OF prostate cancer.  But a) indications are that my
G8 and SVI render SRT pretty useless, b) I'll still do the research when
the time comes, c) maybe some other option such as immuno-this or
anti-that or chemo-whatever will compete with SRT by the time I hit 0.4,
at least considering my SVI, d) met detection will be at least a little
bit -- maybe significantly -- better by then (RT w/mets makes little
sense), and e) I get another PSA reading in a couple of weeks. (I'll
have to get some semi-log paper out and predict it just for kicks.)

I.P.
fred - 19 Mar 2006 04:37 GMT
Thanks to all who responded. This NG is a great resource!!

Went back and checked path report. SVI negative.

All 3 docs seem to be saying clearly that the rise in PSA is, in their
opinion, no fluke, especially if next PSA test increases.

I appreciate but am still troubled by IP's comments, although I
understand SVI and G8 probably make our situations different.  If I
have PSA readings of .003 (3 months after surgery), .050 (22 months
after surgery), .082 (26 months after surgery), and (say) .100 (28
months after surgery), is there any cogent reason to question whether
PSA will continue to rise? My gut feeling (and apparently the opinion
of my 3 docs) is that there's a clear pattern and that further rises
are inevitable. But if there is a real possibility that my PSA will
stabilize, or that these readings are flukes or unreliable, then I need
to re-evaluate. Otherwise, it seems to me my choices are radiation now
(with any SEs) or radiation later (with any SEs).

Am I missing something?

Fred
Alan Meyer - 19 Mar 2006 05:04 GMT
> Thanks to all who responded. This NG is a great resource!!
>
[quoted text clipped - 18 lines]
>
> Fred

If I understood him correctly, Bill Denton was suggesting
a maximum anti-cancer diet and lifestyle.

I think it was Steve Jordan who recently said that we each
have a certain rate of tumor cell division and a certain
rate of tumor cell death.  If the former exceeds the latter,
cancer spreads.  If the latter exceeds the former, it does
not.

If your cancer is very slow growing, and if you haven't tried
it yet, why not give Bill's strategy a shot between now and
your next PSA.  Maybe you can get on the right side of
Steve's equation and never actually break .100.

I think it's worth a try.  But then you've got three experts
recommending radiation and they all know more than we
do.  If you can stop the PSA rise with the right nutrition,
then let's see what the experts say.

Now you ask, what's the right nutrition?  Well I'm not an
expert there either.  Suggestions I've seen include:

 lycopene (tomato juice or sauce, watermelon)
 turmeric (curry powder)
 EGCG (green tea)
 soy (some debate on that, Ed Friedman thinks it works
    counter to hormone therapy, but I haven't seen him
    say it's bad if you're not on HT)
 vitamin E
 vitamin D
 selenium
 and a new one, capsaicin (chili peppers)

The vitamins and selenium are dangerous to overdose on,
so don't overdo them.

   Alan
I.P. Freely - 19 Mar 2006 06:00 GMT
> why not give Bill's strategy a shot between now and
> your next PSA.
>
> Now you ask, what's the right nutrition?  

It ain't the meat and fat Bill's advocating. I have never seen that
recommended anywhere for any cancer; in fact it's blamed for many of
them, with varying degrees of linkage.

I.P.
Steve Kramer - 19 Mar 2006 08:28 GMT
>  soy (some debate on that, Ed Friedman thinks it works
>     counter to hormone therapy, but I haven't seen him
>     say it's bad if you're not on HT)

What has been said is that soy is good if you have a prostate and not so
good if you have prostate cancer because soy tends to hinder apoptosis.  I
don't think it was Ed who said it, or at least I don't think he was the one
I remember saying it.  Maybe ron.

In any case, a new study is out, according to the radio news, saying the soy
isn't all the beneficial for anything.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06
PSA  .07 .05 .06 .09 .08 .132
Non Illegitimi Carborundum

I.P. Freely - 19 Mar 2006 05:55 GMT
> I appreciate but am still troubled by IP's comments, although I
> understand SVI and G8 probably make our situations different.

Yup and yup. SVI is a medium-sized red flag (lymph node involvement
would be a BIG red flag) for future mets, and with mets RT is useless.
And every additional Gleason number is a notch closer to future mets.

> My gut feeling (and apparently the opinion of my 3 docs) is that
> there's a clear pattern and that further rises are inevitable.

Yes, and so will mine, I presume, if it approaches  the magical 0.4
decision point steadily. With G8 and SVI, I assume that will be  my
scenario. But since adjuvant tx success is such a crap shoot, each of us
should dig into the crap and come up with a list of pros and cons for
each major form of adjuvant tx ... RT, WW, ADT, etc. Even if God sent me
a tablet in a burning bush saying "I.P., your PSA will keep rising and
your cancer is returning" is not by itself a valid reason to actively
treat the beast; I also want to know as much as I can about the pros and
cons of each option, including WW.

One BIG criterion of SRT is the source of the PSA; is it in the RT field
or not? If not, it's pointless, and the methods and accuracy of tests
for mets are improving. I'm not going to ignore any of them that is
likely to reveal a met. If we get a false negative -- a very real
likelihood with a small met -- so be it; we tried, and will never know
it was false at the time. But a met positive is time to shift our focus
to other adjuvant txs.

Another question: What other health threats loom?

And then there's, "What will each tx add to -- and take away from -- my
life?" NONE of the txs guarantees a cure, and every one guarantees at
least SOME SEs; I'll be plugging my cancer numbers into the tx
statistics to paint the best picture they can of my benefit vs downside
prognosis. I did that with the adjuvant ADT my oncs recommended after
RP, and got a clear answer for myself. I hope my SRT evaluation, when it
becomes necessary, reveals an equally clear answer either way. But no
one is recommending RT until I approach 0.4, and Strum came right out
and said it will be essentially useless even then FOR ME.

> it seems to me my choices are radiation now
> (with any SEs) or radiation later (with any SEs).
>
> Am I missing something?

What about ADT? WW? Maybe chemo will be feasible by the time you need to
act. (Outcomes vary very little, if any, for waiting up to six months
after recurrence; it's delays longer than six months' that affect outcomes.)

You'll notice I didn't say much about simply asking my docs for a
decision. Why? Because it's my dang life, not theirs. Their first,
second, and third criteria are maximizing my lifespan; many docs don't
include QOL AT ALL in their success criteria. My top criteria include
QOL. That's less of an issue with SRT than with adjuvant ADT, but it
still matters, ESPECIALLY if my PSA is coming from a rib, lung, or
vertebra.

I.P.
Steve Kramer - 19 Mar 2006 08:23 GMT
> I appreciate but am still troubled by IP's comments, although I
> understand SVI and G8 probably make our situations different.  If I
[quoted text clipped - 9 lines]
>
> Am I missing something?

You are not.

There may be one more piece of information to digest.  Some very good
doctors believe that your pattern of PSAs indicate a good chance that your
cancer (assuming your PSA continues to rise) resides on your prostate bed.
That is another good reason for radiation.

But, radiation comes with baggage.  But, then, so does every other treatment
under the sun -- including, sun tanning!

I believe IP would say that he is not trying to dissuade you from radiation
as much as he is trying to persuade you toward research.  I don't think your
decision will change, but after research, it really becomes YOUR decision.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06
PSA  .07 .05 .06 .09 .08 .132
Non Illegitimi Carborundum

ronju99 - 19 Mar 2006 13:34 GMT
Everyone seems to discount the possibility that the PSA could very well be
the result of benign prostate tissue left over after surgery that will
continue to grow over time and result in the low level test results. That
is why many specialist aren't concerned with results <.1.

I can't help but wonder why Fred's PSA test were done with the standard
test and then later followed up with ultra senitive test. Must have good
insurance.

Ron S.
fred - 19 Mar 2006 14:42 GMT
Why were my PSA tests done with standard test and later followed up by
ultra sensitive test?

Not so much good insurance but a conscientious family doctor. My first
2 (ultra sensitive) tests were done at the Cleveland Clinic and this is
apparently what they automatically use. Subsequent tests were done by
local lab nearest to my home, and they use only standard test. Family
doctor (who gave me the scrip for the test) finally said that he wanted
Ultra tests and made me drive to the nearest lab that did Ultra tests.
Not sure whether I should be thanking him or not at this stage!!??! I
could have had about a year of blissful ignorance of being <.1

Which raised some questions for me. Family friend who is former head
pathologist at a respected hospital says that he feels that Ultra tests
at very low levels (<.1) should not be relied on for clinical
decisions. However, he seems to agree that in my case, if a get one
more test showing an increase (especially if >.1), that would satisfy
him that I need to act. Apparently the clinical value of ultra tests at
<.1 is to establish trend. At least, that is what my 3 docs say, and
that is why they want me to do one more test to confirm trend before
radiation.

Another interesting story. I had heard that Hopkins uses only standard
tests, because of the above issues and to allay the PSA anxiety that we
all share. So, I happened to be in Baltimore last fall and showed up at
their lab and got blood drawn for PSA test. Told the receptionist and
the tech that I was post RP, and, sure enough, they told me (and showed
me on their computer) that "normal" for post RP was <.2 !! Phone call
the next day confirmed that I was "normal....less than .2" So no
worries!

Confusing, ain't it? At least it is for me!

Fred
Steve Kramer - 19 Mar 2006 16:11 GMT
> Not so much good insurance but a conscientious family doctor. My first
> 2 (ultra sensitive) tests were done at the Cleveland Clinic and this is
[quoted text clipped - 4 lines]
> Not sure whether I should be thanking him or not at this stage!!??! I
> could have had about a year of blissful ignorance of being <.1

Then you may continue.  Your three labs have given you fairly static results
in three ranges, respectively.  That is exactly why you need to deal with
one and only one lab.  Were I you, I would discount any but your last
results at the ultrasensitive lab.

> Another interesting story. I had heard that Hopkins uses only standard
> tests, because of the above issues and to allay the PSA anxiety that we
[quoted text clipped - 6 lines]
>
> Confusing, ain't it? At least it is for me!

First I've heard of that.  But, it reinforces my curiosity as to why bother
with ultrasensitive.  It hightens the stress without giving you any data
that you can (should) act on at that level.
Ron B - 19 Mar 2006 19:16 GMT
Great discussion and information guys.

It's what I've learned to expect here.

My 2 questions...if Fred didn't have SVI, how did they say that the
extracapsular activity came about?

How did they know?

And...I.P. mentioned in one of his posts about the magic .4 number to
take action.

I thought that .2 was the number (and not magic by any means).

Thanks everyone...I wish you all well,

Ron B.

Chicago
ronju99 - 19 Mar 2006 20:04 GMT
The standard by many specialist like John Hopkins is two consecutive
results of .2 or greater or one test result of .4 or greater as an
indicator of recurrence. Because there are other things that can cause PSA
in the blood, ultra-sensitive test don't distinguish between those others
causes. One can't assume that a low result indicates cancer, it could be
benign tissue growth. Subjecting ones self to salvage treatment without
better proof that the PSA is cancer driven would be foolhardy given the
side effects and the quality of life issues.

Ron S.
I.P. Freely - 21 Mar 2006 00:05 GMT
Ron B wrote >
> I.P. mentioned in one of his posts about the magic .4 number to
> take action.
>
> I thought that .2 was the number (and not magic by any means).

Just another example of differing opinions among the experts, many of
whom I'm told are trending towards 0.4 as a threshold for taking action
... IF one opts to act on PSA failure rather than waiting for symptoms
... yet ANOTHER point of contention among experts.

I.P.
I.P. Freely - 20 Mar 2006 23:57 GMT
> I believe IP would say that he is not trying to dissuade you from radiation
> as much as he is trying to persuade you toward research.  I don't think your
> decision will change, but after research, it really becomes YOUR decision.

You believe correctly, and emphasized the right key word.

I.P.
Martin - 30 Mar 2006 23:24 GMT
> If I have PSA readings of .003 (3 months after surgery), .050 (22 months
> after surgery), .082 (26 months after surgery), and (say) .100 (28
> months after surgery), is there any cogent reason to question whether
> PSA will continue to rise? My gut feeling (and apparently the opinion
> of my 3 docs) is that there's a clear pattern and that further rises
> are inevitable.

I had a similar pattern, after a number of tests at <0.1 (standard
test), it rose in three steps to 0.17 or so.  My two docs, including a
top guy at Dana Farber, agreed that it was going to continue to rise,
and I had EBRT plus 6 months of Lupron & Casodex.  Undetectable results
for nearly three years.  Two months ago an uptick to .02, but we'll
wait and see if that progresses or is a fluke.
Steve Jordan - 30 Mar 2006 23:59 GMT
On March 30, Martin wrote, regarding his PSA tests:

(snip)
> .....I had EBRT plus 6 months of Lupron & Casodex.  Undetectable results
> for nearly three years.  Two months ago an uptick to .02, but we'll
> wait and see if that progresses or is a fluke.
>  
Been there, done that, got the T-shirt.

I'm sure that it's a blip in the lab.

For over a year, I've had monthly PSAs of <0.01.

Except when I didn't.

One time, I had a report of 4.87 ng/ml, a monumental rise in 28 days. It
is virtually impossible for that to happen. There was talk of
immediately starting chemo. I ordered a confirmatory test. Result: <0.01
ng/ml. The lab had made an error. They apologized but didn't even offer
me a drink to soothe my ruffled feelings. Humph.

BTW, the lesson to be learned here is to know the characteristics of
your disease and take charge of your case. IOW, knowledge is life. If I
had slavishly obeyed the dictates of my medic, I would have undergone
God knows what due to absolutely unnecessary chemotherapy. It does give
one pause, doesn't it?

A few other occasions, the results were 0.02. Once 0.03. All of which
was meaningless unless, as I think Martin knows, there is a serial rise
over at least three months.

What's involved here is one-hundredth of a nanogram. A nanogram is
1/1,000,000,000 of a gram, so small you wouldn't notice it if it were
poked into your eye.

Bottom line: fear not.

Regards,

Steve J

"What are the facts? Again and again and again -- what are the facts?
Shun wishful thinking, ignore divine revelation, forget 'what the stars
foretell,' avoid opinion, care not what the neighbors think, never mind
the unguessable 'verdict of history' -- what are the facts, and to how
many decimal places? You pilot always into an unknown future; facts are
your single clue. Get the facts!"
--Lazarus Long
I.P. Freely - 18 Mar 2006 18:38 GMT
> The quote from Strum was in response to my questions to him about early
> vs. late salvage HT. His mutation theory makes sense but it is not held
> by the majority of uros and med-oncs.

I also wonder whether his statement "early beats later" includes SEs or
just addresses only the mutation picture. Certainly SEs are less of an
issue with RT than with ADT, especially in the short term, but it does
have risks, which are greater if the pt already has symptoms which can
be exacerbated by RT. Heck, if we looked only at the benefits, we'd all
get RP/RT/ADT/chemo and start drinking our own urine the first time our
PSA hit 3.0.

I.P.
ronju99 - 19 Mar 2006 20:37 GMT
http://urology.jhu.edu/newsletter/newsletter.php?var=829.php&id=8
Interesting reading on the matter from John Hopkins.

Ron S.
Bill - 19 Mar 2006 23:47 GMT
Hey, don't anyone hold me up as a success story yet - it may well be
that I am just marking time. Nevertheless, assuming as I do that I had
systemic disease all along (which means that I have had ZERO Tx for the
most dangerous part of my case), my PSA has risen slower than I feared
and that might have been expected. At 47 mos. post-RP w/ no adjuvant or
salvage Tx my last PSA was .67, only up .07 in the previous 6 mos. I
was quite happy about that. I have not practiced what I suggested to
Fred in that I have not eliminated red meat from my diet. I do eat much
better than I used to but I am by no means on any extreme diet and I
still don't get near the amount of fruits and vegetables that I should.
I have never been into desserts so I do have a low sugar intake. I
attribute my "success" to a strong immune system - I never get sick; I
literally cannot remember the last time I was sick. I would say that I
have not seen a doctor for anything other than my PCa or arthritis in
decades. Of course, that is why I was diagnosed  w/ a first-ever PSA of
33! As all 3 men in my generation on my father's side have had PCa, my
otherwise undefeated immune system was faced w/ an even greater force -
genetics - and could not eradicate it on its own. At that time I took a
multi-vitamin but nothing else. I think that removing the vast majority
of the tumor load via RP has brought the disease down to a level that
my immune system now has a fighting chance. It may bend - my PSA will
surely continue to rise - but as long as it doesn't break for another
10 years or so, I will be happy. By then perhaps they will have
something else to take me to the end of my normal lifetime.

So, all I am saying to Fred, or anyone else in his position (low risk
disease, caught early, healthy person, recurrence caught really early
via ultrasensitive PSA) is that you do not have to rush into anything -
you have time, maybe even a year, before the optimum time for SRT
passes. You just might consider - w/ your doctor's oversight - dietary
change, an exercise regimen, and nutritional supplementation in the
meantime until your numbers tell you that is not working.

"This seems to be as good a point as any other to remind folks that
radiation therapy, specifically IMRT, is not necessarily confined only
to the gland (or the "bed"). It can also be programmed to treat the
seminal vesicles and pelvic lymph nodes, too."

I'm not that up on RT as a primary Tx but I assume that is the case.
However, that does not address the true implication of seminal vesicle
involvement. The reason SVI is a negative predictor of a durable
response to SRT is not because there may be residual PCa in them
(actually, what's left of them, since they are removed in toto in the
standard RP) but because SV tissue has high metastatic potential. The
fact is that if you had PCa in your SVs at the time of your primary Tx,
there is a much greater risk that the PCa had already gotten loose in
your body.

Bill Denton
RP 2/12/02
PSA .67
Memphis
ronju99 - 20 Mar 2006 02:12 GMT
One other important note. Most nerve sparing surgery results in prostate
tissue left behind and will cause a low level PSA. So don't jump to
conclusions about a little PSA if any nerves were spared.

Ron S.
Alan Meyer - 20 Mar 2006 00:05 GMT
> http://urology.jhu.edu/newsletter/newsletter.php?var=829.php&id=8
> Interesting reading on the matter from John Hopkins.
>
> Ron S.

Ron,

Very interesting indeed.

My views on best practices for PCa treatment keep changing all
the time.  I had been leaning towards aggressive treatment for
a recurrence, but this article makes me lean back again.  Their
conclusion is that some men should have aggressive treatment
after a recurrence and some men should not.  The key is to
find out what your personal recurrence characteristics are before
you decide what to do.

Fred,

You might print the Hopkins newsletter article and show it to
your doctor to see if he has an opinion about it, or if it modifies
his opinion about what to do in your case.

   Alan
Claude - 20 Mar 2006 01:17 GMT
>> http://urology.jhu.edu/newsletter/newsletter.php?var=829.php&id=8
>> Interesting reading on the matter from John Hopkins.
[quoted text clipped - 12 lines]
> find out what your personal recurrence characteristics are before
> you decide what to do.

That was a very good article, and I've saved it. It will really help in a
decision.

Claude
DominicM - 27 Mar 2006 02:20 GMT
Well after seeing oncs (rad & med) Hopkins & MSKCC the concencus was
begin to radiation. I start tomorrow (39 sessions IMRT - 72 Gray).
The positive margin was a big determining factor. Hopefully it kills
the beast!

Current age = 49
6/03 - PSA 2.0,  6/04 - PSA 2.5,
8/05 - PSA 4.2,
BIOPSY 8/16/05, T2A, 3+5 = 8
11/05 - PSA 5.89
RP 12/13/05, CONFIRMED GLEASON 3+5=8, SEMINAL & LYMPH - NEG
EXTRACAPSULAR EXTENSION TO MARGIN, POSITIVE MARGIN - RIGHT APEX
PSA POST RP 1/26/06 = 0.5 (local lab), 2/1/06 = 0.55 (MSKCC)
I.P. Freely - 27 Mar 2006 03:13 GMT
> Well after seeing oncs (rad & med) Hopkins & MSKCC the concencus was
> begin to radiation. I start tomorrow (39 sessions IMRT - 72 Gray).
[quoted text clipped - 9 lines]
> EXTRACAPSULAR EXTENSION TO MARGIN, POSITIVE MARGIN - RIGHT APEX
> PSA POST RP 1/26/06 = 0.5 (local lab), 2/1/06 = 0.55 (MSKCC)

Sounds very logical to me. All indications are that a) adjuvant tx is
necessary, b) there is quite likely to be cancer remaining in the
prostate bed, c) the neg lymph nodes minimize the odds that the
remaining PSA is from distant mets this soon, d) if you're gonna get
adjuvant tx the earlier the better, e) SRT is less obnoxious than ADT,
f) ADT cannot cure but SRT can, and g) you'll still have the ADT option
if your cancer goes to mets in the future.

That's a no-brainer in my book. Best of luck.

I.P.
Steve Kramer - 27 Mar 2006 12:23 GMT
> Well after seeing oncs (rad & med) Hopkins & MSKCC the concencus was
> begin to radiation. I start tomorrow (39 sessions IMRT - 72 Gray).
> The positive margin was a big determining factor. Hopefully it kills
> the beast!

Good luck, Dominic.  It is a beast!  If you can't kill it, there are still
lots of options to tame it considerably.

About your Gleason....  was that 5+3 or 3+5?  I originally had in my head
the former.
Alan Meyer - 28 Mar 2006 17:50 GMT
> Well after seeing oncs (rad & med) Hopkins & MSKCC the concencus was
> begin to radiation. I start tomorrow (39 sessions IMRT - 72 Gray).
[quoted text clipped - 9 lines]
> EXTRACAPSULAR EXTENSION TO MARGIN, POSITIVE MARGIN - RIGHT APEX
> PSA POST RP 1/26/06 = 0.5 (local lab), 2/1/06 = 0.55 (MSKCC)

It sounds to me like you're doing the right thing here.  With
these numbers, there's a decent chance of success with
radiation.

Best of luck.

   Alan
DominicM - 29 Mar 2006 03:32 GMT
Thanks Alan & Steve!.

To Steve's question I was a 3+5.

Interesting stat I learned today. I started radiation yesterday and
they wanted to do blood counts and decided to do a PSA as a new
baseline. My
last one was on 2-1-06 (about 6 weeks after RP ...it was .55) .  They
did another yesterday and it came back .95.  This sucker is really
replicating fast. Good thing I didn't deliberate any longer!
I.P. Freely - 20 Mar 2006 23:55 GMT
A new prostate book on the shelves contains two interesting statements
about the differences between initial/primary RT and post-RP SRT,
paraphrased here:

1. SRT is far more likely to cause physical urinary complications such
as bladder neck constrictions, strictures, or [there was a third example
I've forgotten]. SRT ues higher power and thus cooks the goodies more
than primary RT, heightening their risk.

2. Because the cancer is now (presumed to be) outside the area the
prostate occupied, the SRT radiation field must sweep a wider area,
further heightening the risk to surrounding areas [such as the colon].

It was "The Complete Prostate Book" by J. Stephen Jones, published Sep
05. It's at Amazon, Powell's, etc. I found it too close to midnight and
too many hours from home last night to make careful notes or scan the
book thoroughly, but it looked like an excellent addition to our list of
recommended books.

I.P.
billscancercure@yahoo.ca - 20 Mar 2006 23:19 GMT
Read Bill's Cancer Cure.
Steve Jordan - 21 Mar 2006 01:23 GMT
> Read Bill's Cancer Cure.

Whatever for?

Regards,

Steve J

"A man's most valuable trait is a judicious sense of what not to believe."
-- Euripides
billscancercure@yahoo.ca - 21 Mar 2006 03:43 GMT
STEVE,

You are a FOOL.  Bill's Cancer Cure is NOT selling anything.  Bill's
Cancer Cure is free!  How many people will die because you casually
misinterpreted Bill's Cancer Cure as a selling ad?
I.P. Freely - 21 Mar 2006 04:18 GMT
>  Bill's Cancer Cure is free!  

No, it's not. If even one person believes B'sCC and delays treatment too
long as a result, the cost of B'sCC is one needlessly miserable SOB,
maybe even a death.

No, it's not. It cost us many collective minutes we'll never get back.
And, yes, we "have" to reply just to be sure no one believes and acts on
B'sCC.

No, it's not. My BP goes up several points when I encounter idiots.

I.P.
billscancercure@yahoo.ca - 21 Mar 2006 20:17 GMT
Let's get something strait.  I don't want anyone to delay treatment.

Your collective minutes have only been wasted if B'sCC has no value.
Otherwise you may have made the best investment of your life.

>And, yes, we "have" to reply just to be sure no one believes and acts on
B'sCC.

Why is so much effort being made to dismiss B'sCC?  Do you have any
evidence other than your feeling, that it has no value?  What if it
actually is THE cure for cancer?  How are you going to feel when you
realize you are a member of the Inquisition?
Ron B - 21 Mar 2006 21:14 GMT
I AM gonna leave this to the more expert members...but if in Canada,
they spell 'straight' as 'strait'...you have even LESS credibility.

Heather can set us..uh...'straight.'

Stupe is the proper term Billy.

It seems like you've taken too many slapshots to the head.
I.P. Freely - 21 Mar 2006 23:09 GMT
> I AM gonna leave this to the more expert members...but if in Canada,
> they spell 'straight' as 'strait'...you have even LESS credibility.

I don't even care how he spells "strate"; I almost NEVER see "its'
spelled properly even in ads from blue chip corporations, and apparently
almost no one knows how to use "him and me" properly? What I object to
is his apparent belief that the world's medical professionals -- from
microbiologists to the drug companies -- have simply overlooked a cure
worth millions of lives and billions of dollars. It's just not rational,
 we've seen it all for hundreds of years, and false hopes based on
snake oil have cost untold lives, misery, and fortunes.

I.P.
Alan Meyer - 22 Mar 2006 02:23 GMT
> ... What I object to
> is his apparent belief that the world's medical professionals -- from
> microbiologists to the drug companies -- have simply overlooked a cure
> worth millions of lives and billions of dollars. It's just not rational,
>   we've seen it all for hundreds of years, and false hopes based on
> snake oil have cost untold lives, misery, and fortunes.

Bill,

I.P. has hit the nail on the head here.

I believe that your intentions are the best and that you
sincerely believe you've discovered something critical.
The problem is that what you have done happens thousands
of times a day.  Somebody does something or sees
something or has an idea, and comes to the conclusion
that they've discovered a cure for cancer, or Alzheimer's
or polio, or the common cold, or who knows what.

But science doesn't work that way and cures are not
discovered that easily.  It requires real data, real evidence,
repeatable results, and if possible a real scientific
explanation before we have any reason at all to give
any credence to any of these "cures".

Literally thousands of treatments have been proposed for
prostate cancer.  The only ones that have been proven
to work are surgery, radiation, and hormone therapy.
To the best of our knowledge, none of the others have
ever passed the tests of evidence and repeatability.

How many people have died because they put their faith
in laetrile?  How many have died because they thought
organic foods would cure their cancer?

If even one person takes your iron chelation theory seriously
and decides to give it a try before trying invasive treatment,
and that person delays too long while he tries your therapy,
then he's a dead man who might have been cured.

Do you want that on your conscience?

Until you've got got scientifically acceptable evidence, you
are treading on very, very dangerous waters in proposing
your own cures.

I know you've cited some articles about the relationship
of cancer and iron in in vitro studies.  There may indeed
be something to it.  But you shouldn't cite it as any kind
of treatment until we have hard evidence that it works in
the human body and really does cure cancer.

Personally, I suspect it will not.  I'd be thrilled it were
proven otherwise.  But in no circumstances would I recommend
it as a cure or even as an adjuvant treatment until I've seen
more evidence.

   Alan
   Who also loves ya.
I.P. Freely - 22 Mar 2006 03:07 GMT
> If even one person takes your iron chelation theory seriously

Is THAT what that story was about ... chelation? Jeez, why didn't he
just SAY SO? Was he afraid we'd Google chelation and see how out of
favor that old saw is?

I.P.
Alan Meyer - 22 Mar 2006 03:26 GMT
> > If even one person takes your iron chelation theory seriously
>
> Is THAT what that story was about ... chelation? Jeez, why didn't he
> just SAY SO? Was he afraid we'd Google chelation and see how out of
> favor that old saw is?

I'm not even sure.  He seems to be promoting at least two
therapies - vegetarianism and iron chelation.

Having close relatives with Alzheimer's Disease I also follow
that support group from time to time.  Bill is posting there too
with iron chelation and vegetarianism as treatments for that.

Unfortunately, there are a large number of Americans, possibly
a majority of us, who have only a hazy and inconsistent notion
of what "science" is.  They honestly think they're being rational
and doing the right thing in proposing quack cures.  But when
you talk to them about evidence, repeatability, underlying
explanations, clinical trials, etc., they just don't understand
what you're talking about.  You might as well be speaking
Chinese.

It's very sad.

   Alan
I.P. Freely - 22 Mar 2006 06:12 GMT
Alan Meyer observed
> Unfortunately, there are a large number of Americans, possibly
> a majority of us, who have only a hazy and inconsistent notion
[quoted text clipped - 4 lines]
> what you're talking about.  You might as well be speaking
> Chinese.

The Albuquerque (New Mexico, USA) Journal published an explanation, with
diagrams, explaining the heavenly body juxtaposition that produces lunar
eclipses. Simple, clear, factual, obvious, scientific.

My jaw dropped when a letter-to-the-editor appeared a few days later
criticizing the newspaper's bias. It was exceptionally articulate, so I
initially presumed its writer was joking when she complained that
presenting science as fact was an insult to reality as defined by her
point of view. She went on to explain that lunar eclipses were caused by
... and there she lost me with dogma about the gods and the stars and
karma and stuff. The stunning part was not that she actually believed
her eclipse explanation, but that she genuinely believed that science
across the board was nothing more than one race's invention and opinion
of everything. She had gotten clear through high school and, I believe,
through college, without ever gaining the slightest comprehension that
science and facts differ from such things as feelings, folklore, rumor,
and opinions, that reality was different for each group of observers.

I.P.
Alan Meyer - 22 Mar 2006 20:32 GMT
> Alan Meyer observed
>> Unfortunately, there are a large number of Americans, possibly
[quoted text clipped - 23 lines]
>
> I.P.

We seem to be doing a really bad job of teaching people the
fundamentals of a scientific outlook.  I'd like to see some sort
of national educational initiative to do something about it.

In the 1950's, after Sputnik there was a big push to train scientists
and engineers.  But we seem to have lost it after that.

I have been amazed at the number of college educated people
I've met who are confused about these issues.  One particularly
popular misconception (in my view) is that there is "western"
science and "eastern" science, and they offer competing and
equally valid viewpoints.  There is "western" medicine and
"alternative" medicine - also equally valid.

To quote a spoof in a recent Doonesbury cartoon - we have to
recognize the validity of both sides in a controversy, not just the
one supported by the facts.

My favorite definition of science is "common sense made
systematic."

    Alan
I.P. Freely - 22 Mar 2006 22:28 GMT
> In the 1950's, after Sputnik there was a big push to train scientists
> and engineers.  But we seem to have lost it after that.

As an engineer in the mid 1960s, I received at least one phone call per
week offering me a substantial pay increase to jump ship (I worked for
Boeing) to any of a long list of firms, due to the huge engineer shortage.

In 1968 an  engineer friend warned me we'd be out of work the minute we
beat the Russkies in the space race. We laughed at him.

When I was ready to get out of the Air Force in 1972, after we beat the
Russkies in space, there was virtually no demand for engineers. Four
years from boom to total bust.

I.P.
billscancercure@yahoo.ca - 22 Mar 2006 18:06 GMT
Alan,

>Bill is posting there too
with iron chelation and vegetarianism as treatments for that.

That is not I.
Alan Meyer - 22 Mar 2006 20:33 GMT
>> If even one person takes your iron chelation theory seriously
>
> Is THAT what that story was about ... chelation? Jeez, why didn't he just SAY SO? Was he
> afraid we'd Google chelation and see how out of favor that old saw is?

Apparently I got that wrong.  Bill says he's not promoting iron
chelation.  I've confused him with another guy.

   Alan
billscancercure@yahoo.ca - 22 Mar 2006 18:00 GMT
Alan,

I have nothing to do with iron chelation therapy.  There was no mention
of iron.
Alan Meyer - 22 Mar 2006 20:19 GMT
> Alan,
>
> I have nothing to do with iron chelation therapy.  There was no mention
> of iron.

Sorry Bill, I got you confused with someone else.

Can you say, in a nutshell, what the therapy is that you
are recommending, and what is the primary evidence
for it?
Heather - 22 Mar 2006 00:11 GMT
Hi Ron.....

We spell is the same as you....."straight", lol.  But anyone can forge
headers and I will do some checking after supper.

OTOH....we have our fair share of nutcases too!!

Cheers....Heather

>I AM gonna leave this to the more expert members...but if in Canada,
> they spell 'straight' as 'strait'...you have even LESS credibility.
[quoted text clipped - 4 lines]
>
> It seems like you've taken too many slapshots to the head.
juniper - 22 Mar 2006 02:33 GMT
I read this, and it did not make any sense.  Kind of a cheesy "waiting
for Godot."  There was ginger in it, was that supposed to be the cancer
cure?  I honestly don't think anyone would think that vague list of
symptoms and guys chatting on the park bench guessing they were curing
each other's (undiagnosed) cancer would be taken as an endorsement of
this behavior as a cancer cure.  Maybe billy here has found a new way
to flame--put something meaningless up and let everyone get upset.
Trust me, if anyone found this an endorsement for a cancer cure, the
snake oil salesmen already found them long ago.

> Let's get something strait.  I don't want anyone to delay treatment.
>
[quoted text clipped - 8 lines]
> actually is THE cure for cancer?  How are you going to feel when you
> realize you are a member of the Inquisition?
I.P. Freely - 22 Mar 2006 02:54 GMT
> Maybe billy here has found a new way
> to flame [i.e., TROLL] -- put something meaningless up and let everyone get upset.

Good guess. I can't imagine what else it's there for, and REALLY don't
understand why he copyrighted his little tale.

I'm also amazed someone read the whole thing. It looked to me too much
like some of the computer-generated verbal spam e-mails my filters block.

I.P.
Dave P - 30 Mar 2006 21:36 GMT
Looks to me like a local and some has been left behind and is growing -
slowly.

I would do exactly what the Docs stated. Wait one more test and if it
increases zap those bad cells.

Been there done that and hoping I maintain the <0.01.

It's past time for new treatments that are more effective.

Dave P
Dave P - 30 Mar 2006 21:37 GMT
Looks to me like a local and some has been left behind and is growing -
slowly.

I would do exactly what the Docs stated. Wait one more test and if it
increases zap those bad cells.

Been there done that and hoping I maintain the <0.01.

It's past time for new treatments that are more effective.

Dave P

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