5 yr Salvage Radiation PSA

Received my latest psa

<0.01 - 5 years after Salvage Radiation

In the beginning - they told me not to bother with salvage radiation
because it wouldnt work since my psa went from <0.1 to 0.3 three
months after surgery and it was a case of being distant with what
appeared to be a rapid doubling time.

They told me my best choice was to just begin hormone treatments since
there wasnt any other treatment available.

They told me after a year or two of hormones they would begin chemo or
register me for a experimental drug trial since hormones only work for
a year or two.

They told me if salvage didnt work then I was destined for hormone
treatment and would have 3-5 good years give or take a few and the
last couple could be tough due to my rate of doubling time for my psa.

They told me Salvage had up to a 20% chance of working but in my case
wouldnt be worth it due to most cases where psa returns after surgery
it is distant and it would only lead to unwanted side effects and
injury.

They told me I had at least 5 years to get things in order and it
would be good to act on it now. But remain hopeful for new medicines
and treatments.

They then told me I couldn't have Salvage due to a swollen lymph node
near my groin that showed on a MRI - they were wrong it was a blood
vessel after further investigation

They told me I was one of the lucky ones since my psa went down months
after receiving salvage to <0.01

They told me not to be surprised or upset when my psa started to rise
18 -36 months after treatment - being told this every six months for a
check-up

They told me when this happens they would begin hormone treatments
when my psa hit 1.0+

They were scratching their heads at 48 months with my psa at <0.01

They arent saying shit at this time.

But I am. Dont believe everything you hear or read. We are each
different and your belief and attitude in beating this disease are
every bit as important if not more than what your physicians,
specialists and others tell you.

Thank you Steve Kramer who put things in perspective and others that
have helped me through the journey. I do pray for you and think about
the group members often. I also want to thank my physicians that gave
me a chance instead of just going the hormone route. They took a
chance on me and so far we won.

I spent 5 years focusing on how to strengthen my immune system and
surviving. Everything I did was toward beating this disease in every
segment of my life. I let some thngs go in my professional life along
the way and will put forth the effort to make a comeback in that arena
of my life. I have to.

Believe

Dave P

"Dave P" <david@trsusa.com> wrote in message
news:4ba53caa-19de-4c2a-b9a9-a009c7549b97@e39g2000hsf.googlegroups.com...
> Received my latest psa
>
> <0.01 - 5 years after Salvage Radiation
>
> In the beginning - they told me
> They told me
> They told me
> They told me
> They told me
> They told me
> They then told me
> They told me
> They told me
> They told me
> They were scratching their heads

> They arent saying shit at this time.
>
> But I am.

That was fantastic! This post is exactly why anecdotal evidence of one
person is so damned important to us.

Uh... oh, yeah... and congrats on another 0.01!

--
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 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
Illegitimati non carborundum

That's a remarkable story Dave.

It's very difficult to go against the advice of doctors. They
have the education and the experience. As a rational person, one
often feels that one has to give in to that and do what they say.

But it ain't always as they say, is it?

It looks like following your gut instinct worked out for you.
That's excellent.

Best of luck for the future.

Alan

On Jun 18, 1:31 pm, Dave P <da...@trsusa.com> wrote:

> I spent 5 years focusing on how to strengthen my immune system and
> surviving. Everything I did was toward beating this disease in every
> segment of my life. I let some thngs go in my professional life along
> the way and will put forth the effort to make a comeback in that arena
> of my life. I have to.

You've beaten it!!!!

Great.

-kh Shows it can be done.

On Wed, 18 Jun 2008 10:31:05 -0700 (PDT), Dave P <david@trsusa.com>
wrote:

>Received my latest psa
>
><0.01 - 5 years after Salvage Radiation
>
>In the beginning - they told me not to bother with salvage radiation
>because it wouldnt work since my psa went from <0.1 to 0.3 three
>months after surgery and it was a case of being distant with what
>appeared to be a rapid doubling time.
>
>They told me my best choice was to just begin hormone treatments since
>there wasnt any other treatment available.
>
>They told me after a year or two of hormones they would begin chemo or
>register me for a experimental drug trial since hormones only work for
>a year or two.
>
>They told me if salvage didnt work then I was destined for hormone
>treatment and would have 3-5 good years give or take a few and the
>last couple could be tough due to my rate of doubling time for my psa.
>
>They told me Salvage had up to a 20% chance of working but in my case
>wouldnt be worth it due to most cases where psa returns after surgery
>it is distant and it would only lead to unwanted side effects and
>injury.
>
>They told me I had at least 5 years to get things in order and it
>would be good to act on it now. But remain hopeful for new medicines
>and treatments.
>
>They then told me I couldn't have Salvage due to a swollen lymph node
>near my groin that showed on a MRI - they were wrong it was a blood
>vessel after further investigation
>
>They told me I was one of the lucky ones since my psa went down months
>after receiving salvage to <0.01
>
>They told me not to be surprised or upset when my psa started to rise
>18 -36 months after treatment - being told this every six months for a
>check-up
>
>They told me when this happens they would begin hormone treatments
>when my psa hit 1.0+
>
>They were scratching their heads at 48 months with my psa at <0.01
>
>They arent saying shit at this time.
>
>But I am. Dont believe everything you hear or read. We are each
>different and your belief and attitude in beating this disease are
>every bit as important if not more than what your physicians,
>specialists and others tell you.
>
>Thank you Steve Kramer who put things in perspective and others that
>have helped me through the journey. I do pray for you and think about
>the group members often. I also want to thank my physicians that gave
>me a chance instead of just going the hormone route. They took a
>chance on me and so far we won.
>
>I spent 5 years focusing on how to strengthen my immune system and
>surviving. Everything I did was toward beating this disease in every
>segment of my life. I let some thngs go in my professional life along
>the way and will put forth the effort to make a comeback in that arena
>of my life. I have to.
>
>Believe
>
>Dave P


That's brilliant Dave - absolutely delighted for you! I'm vaguely
trying to ready myself these days for some unknowable point sooner or
later in the future when I might have to deal with a similar quandary.
From everything you say it's very clear that your advisors were
totally wrong in your case but could it be that their forebodings and
predictions were reasonable, backed up by the stats, and that contrary
to their expectations you have been either very lucky or have had a
well deserved pay-off for taking such good care of yourself?

I really do wonder what these stats are and how well they guide
practitioners. Seeing that your *immediate* post-RP PSA was down to a
satisfactory 'all clear', your medics seem to have wrongly concluded
that your PCa had gone metastatic - perhaps even aggressively so -
*almost immediately* post op! While not out of the question, this
would have seemed to me to be an impressive coincidence of timing.

In fact, I would much rather have inclined to the suspicion that there
was still post-RP cancer present in the vicinity of the prostate bed
that hadn't been excised and was still growing...hence definitely go
for RT.....but what do I know??

In fact if I were testing a theory, it would be "the sooner PSA rises
after an RP, the more likely it is to be local to the prostate bed".
It's a bit simplistic, admittedly, but is it far-fetched? I vaguely
remember something like this being posited here as a loose rule of
thumb. Anyone?

I also wanted to ask you if the 0.3 could have been a laboratory
anomaly. Was it double checked?

Whatever - excellent news.

Thank you everyone.

My psa was checked 3 times and it came back 0.3 each time 100 days
after surgery. It was checked 45 days after surgery and it was <0.1.

Luckily my surgeon suggested/demanded salvage and things worked out
but he pointed out the rapid doubling time and low chance of it
working.

Sloan Kettering stated that they have never seen a case when the psa
comes back so quickly after surgery that wasnt a distant spread case.
They told me it was almost a 100% chance that my PCa had metastasized
and forget the salvage treatment as no person on earth could tell you
where it is. This was backed by countless other physicians and
research studies.

Could it be that the 1st test of <0.1 was wrong? I will never know.
Could it of been some was left behind as I had a positive margin and
the SRT zapped it - probably.

Still, as I have been told to find out if I am cured - the statistics
report 15 years is the correct marker.

My rad/onc told me I was in the 97-98% of being cured. I will take
that.

In addition I had no serious side effects from the procedures. I can
still function sexually without medications etc. Must be my age as I
was 46 when diagnosed.

Either I am very, very lucky, had excellent physicians, or god was
looking down on me. It was probably all three.

I did learn a great deal about prostate cancer and the importance of
vitamin d, stress reduction, exercise and nutrition etc..

Now my primary wants to put me on simvistatin for chloesterol as mine
is 204. No way. I will get it down to 175 on my own terms.

Thanks for listening everyone and keep fighting.

Dave P

Thanks for the extra info Dave. Yes, I suppose one could wonder about
the first post-op result <0.1, but of course no one will ever know
now. It's all food for thought. Interesting but a bit inconclusive
to my mind.

Still, the point is, your well. That's what matters most.

On 19 Jun 2008, you wrote in alt.support.cancer.prostate:



> Sloan Kettering stated that they have never seen a case when the psa
> comes back so quickly after surgery that wasnt a distant spread case.
> They told me it was almost a 100% chance that my PCa had metastasized
> and forget the salvage treatment as no person on earth could tell you
> where it is. This was backed by countless other physicians and
> research studies.

I find it absolutely amazing that uros at Sloan Kettering, recognized for
its doctors and leadership in this disease, would suggest that a man has
metastatic PCa because the PSA came back so quickly after an RP. It would
seem that positive margins as well as extraprostatic extension might be
certainly an indication of a negative prognosis, but to say 'definite
metastatic disease' is far too negative. If the path comes back with
resection margins but the seminal vesicles and the lymph nodes are
negative, pT3, then wouldn't one assume that the adverse PSA being produced
would be from the margins not excised? In other words, the PCa is still in
the prostatic bed. Adjuvant radiation (within a couple of months) or
salvage radiation (if later) would seem to be a logical way to go.

In my particular case, I had a RP in December,05 but in March 06 my first
PSA post op came back 0.87. 5 weeks later it was 1.1. I was refered to a
radiation oncologist who had me do 64 Gy of EBRT in June/July 06 and also
do Lupron as mono ADT. The PSAs since my first check after EBRt (Nov 06)
have all been <0.1 (not ultra sensitive assay). I stopped the Lupron after
18 months (Nov 07) and my first PSA check in May 08 was still <0.1 . I am
hoping that the good news will continue as the Testosterone starts to
recover ( was about 11 on Lupron, now 38 at last check).Original Gleason
was 7 (3+4), bilateral, 20% total prostate involvement.

I am sure that there are others who, like you and me, have benefited from
the additional salvage radiation. My case may, in fact, become metastatic,
but I am hoping that I continue being <0.1. Congrats to you on your
success. Unfortunately, unlike you, I am impotent, expected after a warning
from my rad onc that this would probably be the case.

Let's hope that other success stories continue to occur and, as Sloan
Kettering has indicated, doctors will find distant locations as the imaging
improves over time.

Russ D

"Russ Davies" <daviesr@cogeco.ca> wrote in message
news:%5f8k.10832$Mc.4746@read1.cgocable.net...
> On 19 Jun 2008, you wrote in alt.support.cancer.prostate:
>

> In my particular case, I had a RP in December,05 but in March 06 my first
> PSA post op came back 0.87. 5 weeks later it was 1.1. I was refered to a
> radiation oncologist who had me do 64 Gy of EBRT in June/July 06 and also
> do Lupron as mono ADT. The PSAs since my first check after EBRt (Nov 06)
> have all been <0.1 (not ultra sensitive assay). I stopped the Lupron after
> 18 months (Nov 07) and my first PSA check in May 08 was still <0.1 .

Sounds great, Russ.


--
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 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
Illegitimati non carborundum

On Jun 24, 7:06*pm, Russ Davies <davi...@cogeco.ca> wrote:
> On 19 Jun 2008, you wrote in alt.support.cancer.prostate:
>
> > Sloan Kettering stated that they have never seen a case when the psa
> > comes back so quickly after surgery that wasnt a distant spread case.
> > They told me it was almost a 100% chance that my PCa had metastasized
> > and forget the salvage treatment as no person on earth could tell you
> > where it is. This was backed by countless other physicians and
> > research studies.
>
> I find it absolutely amazing that uros at Sloan Kettering, recognized for
> its doctors and leadership in this disease, would suggest that a man has
> metastatic PCa because the PSA came back so quickly after an RP.
>
> Russ D


This was six years ago. There was no definitive Salvage Radiation
study done at the time. The ones that were available had terrible
success rates 18%, 20%, 40% and this was for the short term. Long term
rates were under horrific. The major research reporting that it was
effective was not out yet and arrived two years later. The research
six years ago was if it was local in the bed it would grow more slowly
and show up in a year or two or longer. If the psa came back quickly
it was a distant spread case being more aggressive. I am now told many
men didnt receive salvage because of this thinking. Now it looks like
up to 50% of them could have had a long term response and at best a
shot at being cured with adjuvant/salvage therapy. When I was asking
for advice on whether to pursue salvage eight out of ten people said
dont do it. I called a research scientist from Northwestern University
that had done one of the first studies on adjuvant therapy and he told
me get to the hospital tommorow and demand the treatment. He stated he
was being attacked from every angle and field about the research. He
took a beating. Turns out he was right on. Things have changed.

The PCa field has made great progress but needs to find that therapy
or drug that can stop PCa from growing.

I once contacted a group of men living in Northern California that
were on a strict low fat diet, exercise regimen, supplementation plan,
stress reduction routine etc. Some of these guys have had PCa for a
decade+ and were living with the disease without any treatment at all.
Kind of bizzare in what they were doing and that they called it
aggressive watchful waiting. Today the Ornish Study reports that this
type of change alters more than 500 genes and fights PCa. These men
did the Ornish Study but took things even further.

The Vitamin D researches report that sunshine and Vitamin D
supplementation of 2000+ per day all by itself will protect you from
PCa. But blood levels need to be monitored.

YET - few physicians will tell you this or recommend this. Why? the
research doesnt validate it - YET

Good luck Russ, I will be praying for you to remain <0.1

Dave,

Congratulations to you. My husb had salvage rad (SRT) a year ago and
so far so good. I, like you, am a believer in salvage rad as a
lifesaving treatment. But even the doctors admit that it's
"underutilized". (I have written a lot about this in my blog
(prostatecancerblog.net), just search "salvage radiation".)

Last week there was blockbuster news in the world of SRT. The results
of a major study about SRT done at Hopkins were published in JAMA and
even dominated the mainstream medical news. The outcomes were very
good. 86% of men who had SRT were alive after 10 yrs., and deaths
were cut by 2/3. Even high-grade, high-velocity tumors seemed to
respond to treatment. Read about this on my blog: "Salvage Radiation
for Prostate Cancer Recurrence Prolongs Life -- Even in Aggressive
Cases". I also wrote about our own experience with SRT and if you've
gone through the tx, that might interest you.

If you are a man with intermediate- or high-grade PC, look into
supplemental radiation. Adjuvant RT (done right after surgery before
the PSA starts to rise) is even more effective than salvage. With this
tx, time is of the essence.

All the best,

Leah





On Jun 18, 1:31*pm, Dave P <da...@trsusa.com> wrote:
> Received my latest psa
>
> <0.01 - 5 years after Salvage Radiation
>
> In the beginning - they told me not to bother with salvage radiation
> because it wouldnt work since my psa went from <0.1 to 0.3 three
> months after surgery and it was a case of being distant with what
> appeared to be a rapid doubling time.
>
> They told me my best choice was to just begin hormone treatments since
> there wasnt any other treatment available.
>
> They told me after a year or two of hormones they would begin chemo or
> register me for a experimental drug trial since hormones only work for
> a year or two.
>
> They told me if salvage didnt work then I was destined for hormone
> treatment and would have 3-5 good years give or take a few and the
> last couple could be tough due to my rate of doubling time for my psa.
>
> They told me Salvage had up to a 20% chance of working but in my case
> wouldnt be worth it due to most cases where psa returns after surgery
> it is distant and it would only lead to unwanted side effects and
> injury.
>
> They told me I had at least 5 years to get things in order and it
> would be good to act on it now. But remain hopeful for new medicines
> and treatments.
>
> They then told me I couldn't have Salvage due to a swollen lymph node
> near my groin that showed on a MRI - they were wrong it was a blood
> vessel after further investigation
>
> They told me I was one of the lucky ones since my psa went down months
> after receiving salvage to <0.01
>
> They told me not to be surprised or upset when my psa started to rise
> 18 -36 months after treatment - being told this every six months for a
> check-up
>
> They told me when this happens they would begin hormone treatments
> when my psa hit 1.0+
>
> They were scratching their heads at 48 months with my psa at <0.01
>
> They arent saying shit at this time.
>
> But I am. Dont believe everything you hear or read. We are each
> different and your belief and attitude in beating this disease are
> every bit as important if not more than what your physicians,
> specialists and others tell you.
>
> Thank you Steve Kramer who put things in perspective and others that
> have helped me through the journey. I do pray for you and think about
> the group members often. I also want to thank my physicians that gave
> me a chance instead of just going the hormone route. They took a
> chance on me and so far we won.
>
> I spent 5 years focusing on how to *strengthen my immune system and
> surviving. Everything I did was toward beating this disease in every
> segment of my life. I let some thngs go in my professional life along
> the way and will put forth the effort to make a comeback in that arena
> of my life. I have to.
>
> Believe
>
> Dave P