Salvage radiation therapy: boon or bane?

[I.P. Freely]

In the thread on "A friend diagnosed", I wrote:

>>> 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.

This tangent of that discussion is outgrowing that thread in a direction
near and dear to many of us, so I've moved it to a new thread.

Now this from Pearse at NZ's Auckland Hospital, in "Prospective
assessment of gastrointestinal and genitourinary toxicity of salvage
radiotherapy for patients with prostate-specific antigen relapse or
local recurrence after radical prostatectomy", PMID: 187078181.1:

• "68%, 21%, and 5% experienced Grade 1, 2, and 3 acute GI or GU
toxicity, respectively." Let's see, uh, carry the nine ... add 2 ... um
.... that's a *94% likelihood* of morbidities (aka toxicities or SEs)
ranging from having to live within sprinting distance of a toilet to
needing frequent hospitalization during and for weeks to months after
treatment.

• "Cumulative incidences of Grade 2 or higher late (aka permanent) GI
and GU toxicity at 36 months were 8.7% and 22.6%, and Grade 3 late GI
and GU toxicity, 1.6% and 2.8%, respectively." That's a 35.7% likelihood
of permanent Grade ≥2 tox, compared to the acute/temporary rate of
"only" 26%. So not only did toxicity increase with time, which is normal
for RT, but by extrapolation the implied rate of permanent Grade 1
toxicity (e.g., chronic diarrhea, vomiting, urinary incontinence) is
93%. Add that to the 35.7% who got late Grade ≥2, and this 2008 study
had 129% of its SRT patients permanently chained to a toilet, unable to
eat normally most of the time, and paying a big price for the rare times
they do enjoy a pain- or nausea-free meal.

Obviously, some pts have both GI and GU morbidities, so simply adding
their likelihoods distorts the picture. Some studies mention this,
dismissing it by suggesting that it offsets the widely suspected
underreporting of morbidities. Another way to look at it is asking one's
self whether having both GI and GU morbidities makes the individual feel
any better because his retching, painful urination, and diarrhea lowers
the next guy's real odds from 1.29 to 1.25.

Back to this study ...
• "None had Grade 4 late toxicity." Well, whoopdie-freaking do. So no
one spent much of their next decade in hospitals as a direct result of
their radiation.

• "The severity of acute GU toxicity (Grade 1 vs. ≥ 2) was a significant
predictor factor for Grade ≥2 late GU toxicity after adjusting for
preexisting GU dysfunction." Isn't *that* reassuring! Some studies
disagree, but many concur with this one, that acute toxicity is highly
predictive of late toxicity.

• "CONCLUSION: Salvage RT generally was well tolerated." That's a damned
lie by any measure.

Do I sound cynical? Good, because I become more so with every new study
I find implicating oncologists as used car salesmen with good hearts.
i.e., You Should Buy My Procedure At Any Cost To Your QOL If It Adds a
Week to Your Life. The problem with that is that VERY few of the studies
conclude that SRT adds any symptomatic benefit to many lives. Most
conclude explicitly that it affects primarily our PSA level while
producing little if any impact on most patients' clinical or symptomatic
mets or on their funeral date. IOW, that the expected benefit of SRT is
strictly on paper, not in our actual lives ... just the opposite of
SRT's morbidity effects. The benefit exceptions accrue at best to the
small selective minority with a very specific set of low-risk
pre-radiation parameters AND zero mets beyond their prostate bed AND who
got their SRT before their PSA hit 0.5, far preferably 0.2 (well below
the level at which there can be any evidence of whether our new tumor is
in our fossa or our spine). However, SRT's threat risk applies to all of
us, even more so to those with ANY lingering SEs from our surgery.

How about it, Punk? Do ya feel lucky?

--
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.

[DaveP]

It's been 8.5 since I had my 40 rounds of salvage radiation after
surgery. No long term side effects. PSA is undetectable.

My psa was 0.3 before salvage.

My Rad/Onc wouldnt go over 68,400 gy as he stated "long term health
effects will occur above 68,400" and the percentages show a dramatic
increase of toxicity above 70gy.

Things may have changed in the last nine years. I know targeting the
cancer etc has gotten better.

My main concern is that men dont stay on top of things and miss out on
the window of opportunity for best results with a psa of 0.1-0.5. Its
50/50 at those numbers. The lower the psa the better. I would
recommend salvage at the first rise after surgery.

I have a friend and his psa is around .7 - 0.9, I hope he has not
missed the window as it went up from 0.2 the past year. Why do some
Doctors wait????

[frank curtis]

On Nov 2, 11:01*am, "I.P. Freely" <fugeddabou...@noway.nohow> wrote:
> In the
> Do I sound cynical? Good, because I become more so with every new study


I.P. I'm with you on this and share your skepticism (cynicism...) for
refusing to buy into SRT, especially after reading those reports of
underreported and undesireable SE's. (Of course, I haven't really
read any posts from this group that confirm actually experiencing
those nasty SE's, so they may be like everything else in this disease,
the luck of the draw.)
But, since your psa is rising and, arguably, is now in the range where
"something" has to be done to treat it, what other option are you
considering?

[I.P. Freely]

frank curtis wrote:
> On Nov 2, 11:01 am, "I.P. Freely"<fugeddabou...@noway.nohow> wrote:
>> In the
>> Do I sound cynical? Good, because I become more so with every new study
>
>
> I.P. I'm with you on this and share your skepticism (cynicism...) for
> refusing to buy into SRT, especially after reading those reports of
> underreported and undesireable SE's. (Of course, I haven't really
> read any posts from this group that confirm actually experiencing
> those nasty SE's, so they may be like everything else in this disease,
> the luck of the draw.)
> But, since your psa is rising and, arguably, is now in the range where
> "something" has to be done to treat it, what other option are you
> considering?
>
>
Excellent question. I'll get back to it as soon as I fix this computer
or buy a new one; I'm typing on eggs now. It's going insane right as my
need for it peaks. It's heading for the shop again right now. I can hit
a key or click a mouse, stand back, and watch 20 things happen on screen
except what I WAnT to happen. SwapPING KEYBOARDS AND MICE DIDN'T HELP.
crAP ... I"M NOT DOING THAT ... MY COMPuteR is.

[I.P. Freely]

frank curtis wrote:
> "I.P. Freely wrote:
>> Do I sound cynical? Good, because I become more so with every new study
>
> I.P. I'm with you on this and share your skepticism (cynicism...) for
> refusing to buy into SRT

Maybe I've overstated my SRT skepticism, so let me clarify it.

Regarding post-RP SRT in general, more and more studies are starting to
include its toxicity in their reports, and some have addressed toxicity
underreporting as their primary issue. The problems I'm aware of include:
1. Many, maybe most, studies ignore toxicity altogether or just say it's
tolerable or minimal. I submit that's the patient's call, not the doctor's.
2. Other studies, and the oncologists I've consulted so far, address
only Grade 3 or worse toxicities, which are pretty horrible by any
measure except in comparison with wracking, highly symptomatic, advanced
PC, which means SRT is of no use anyway. Grade 3 implies significant and
frequent medical (including surgical) intervention, one step short of
Grade 4's extensive, long-term, often life-saving hospitalization. (A
local young lady's breast cancer RT gave her a Grade 5 toxicity when on
her last day of radiation her aorta burned through; she died on the table.)
3. The very few studies that address Grade 2 or 1 long term (i.e.,
permanent) toxicity, which limits and degrades our lives quite
significantly, reveal that this level of SEs occurs with likelihoods in
the 30%-60% range.
4. Toxicity is also graded in terms of what it ADDS TO our morbidity; if
we have urinary or sexual or bowel morbidities before SRT, Grade 1's
degrees of daily vomiting, incontinence, diarrhea, impotence, and/or
etc. are ADDED TO our post-RP morbidities.
5. Some studies "prove" that our acute morbidities will mostly abate
within months, while others "prove" that acute (for a few months) is
very predictive of late (permanent) morbidities.
I'm ignoring the much higher odds of acute SEs, because if the benefit
is big enough, just about any short term misery is worth it.

Therein comes the other facet of my concerns about SRT: its benefit
profile [prolongations and likelihoods of post-SRT PSA recurrence,
clinical recurrence (e.g., spots on a scan), mets (symptomatic
recurrence), and death]vary dramatically according to each patient's
pre-RP, post-RP, and pre-SRT "numbers". To get a given patient's odds of
delayed recurrence, mets, and/or death, he needs to feed his PSA
dynamics, margin status, Gleason numbers, stage, etc. into the
statistical base ... a study's *relevant* outcomes at the very least,
but preferably larger bases such as the VA or the Partin Tables. One
patient profile may give him quite high odds of "success", while the
next patient's profile pretty much hands him very little hope of "success".

This brings up the absolutely vital question: What does "success" mean?
Oncologists and most studies call undetectable PSA a success, so most
studies give SRT very high marks if our PSA is still < 0.2 or 0.4 four
to six years post-SRT. The problem is that most studies -- dang near all
of them -- admit something like "but SRT provides little if any delay in
mets or death compared to going fishing rather than undergoing SRT."
IOW, its primary benefit is limited to PSA readings, not symptoms or
survival. Put yet another way, SRT's primary benefit is strictly on
paper for a majority of patients.

Fortunately, we can feed our numbers into a nomogram and get a better
idea of which side of the statistics our numbers place us. Mine give me
something like 20%-40% odds of "durable benefit", i.e., remaining < 0.2
for six years. Sounds great, doesn't it ... until we read the catch:
its primary benefit is limited to PSA readings, not symptoms or
survival. That begs an obvious question: "You mean I've spent the last 7
years chained to a toilet for *nothing*?"

The best such nomograms I'm aware of are at
http://nomograms.mskcc.org/Prostate/index.aspx .
Their SRT nomogram is based on and developed in the study at
http://jco.ascopubs.org/content/25/15/2035.full .

KEEP IN MIND THAT THIS IS ALL ABOUT BELL SHAPED CURVES, and there will
always be outliers on both sides. My 7-8 undetectable years have more
than doubled my post-op expectations, but that means nothing about the
next round.

> I haven't really
> read any posts from this group that confirm actually experiencing
> those nasty SE's

Yes, I was surprised that only a couple of people responded to the SRT
SE poll, even though its primary objective was not to obtain "odds" but
to get an idea whether so-called low-grade morbidities were as
inconsequential as our docs and the literature would have us believe.

> so they may be like everything else in this disease,
> the luck of the draw.

With a sample of two, that's very possible. I "sampled" two local flesh
and blood SRT pts, and one had zero morbidities while the other received
a totally and permanently blocked urethra; he'll wear his catheter 24/7
until he dies. I've forgotten whether the third case I heard about was
local or in this forum: the fellow whose docs can look up his rear end
and see his bladder. I don't know whether any of these men received any
benefit from their SRT.

Then there's the whole other question of whether to get ADT with the
SRT. It appears to be a coin toss even before considering its toxicity
risks.

> since your psa is rising and, arguably, is now in the range where
> "something" has to be done to treat it

If I want to pursue an elusive cure, yes; every PSA increment drops our
benefit odds, with statistically apparent downticks at 0.2. 0.5. 1.0 and
1.5. By about 2.0, all SRT offers is side effects. Mine was 0.135 a
couple of months ago, and the rad oncs want me to repeat as a sanity
check and a baseline before we "light the fuse". (Maybe they still don't
quite realize how far I'm leaning towards the wait'n'see side of that
fence.) They know I've read hundreds of studies and/or abstracts, yet
still tell me my cure odds are .75 and my late SE odds are 0.05. That's
bullcrap, and an insult to any reasonably informed patient.

I didn't question their advice to skip adjuvant ADT; the literature
supports that. One study disagrees, saying that SRT + 3-6 months of ADT
keeps PSA undetectable for 6 years for many pts. Well, yeah ... that's
what ADT does best; it suppresses PSA. Can they say with any authority
that a few months of ADT has no effect 6 years later? Besides, that same
study admits that the benefit does not extend beyond PSA control to mets
or death timing.

> what other option are you considering?

The only alternative I can think of is this plan:
1. Refuse SRT, watch my PSA annually out of sheer curiosity, and pursue
ADT if and when any mets reach the point that ADT, SEs and all, makes me
feel *better*. More and more studies and authors are trending in that
direction.
AND
2. Keep my eyes peeled for a magic PC pill to emerge.
AND
3. Make an inquiry of a color-doppler ultrasound expert to verify that
they can't find a tumor at a PSA < 0.5 ... and whether any such fossa
tumor reduces the odds my elbow or lung are involved, rendering SRT
useless.
AND
4. When my PSA reaches a level that a met may be pinpointed on a scan,
consider irradiating that spot.
AND
5. Continue trying to find a study showing that PSADT increases
significantly with Gleason 8 cancer. That's what one local rad onc says
will cut my time in half, but her references don't show that.
AND
6. Consult with another, big-city, renowned rad onc selected by my uro
onc.
AND
7. Keep on windsurfing my brains out.

I.P.

[I.P. Freely]

DaveP wrote:
> It's been 8.5 since I had my 40 rounds of salvage radiation after
> surgery. No long term side effects. PSA is undetectable.

That's great! If you're not in a minority, you're at least in a slim
majority, as best as I can tell.

> My psa was 0.3 before salvage.

You were wise to act then. The literature strongly indicates that a
great balance between acting before recurrence is certain and acting
early enough to maximize your benefit likelihood.
>
> My Rad/Onc wouldnt go over 68,400 gy as he stated "long term health
> effects will occur above 68,400" and the percentages show a dramatic
> increase of toxicity above 70gy.

Again, he's reading (or writing) the literature, and research shows that
decisions based on the literature are consistently more valid than
experts' gut feels.

> Things may have changed in the last nine years. I know targeting the
> cancer etc has gotten better.

Yes, but too many rad oncs seem to be letting that give them too much
confidence with higher Gy.

> My main concern is that men dont stay on top of things and miss out on
> the window of opportunity for best results with a psa of 0.1-0.5. Its
> 50/50 at those numbers. The lower the psa the better. I would
> recommend salvage at the first rise after surgery.

So do virtually all papers addressing that issue.
>
> I have a friend and his psa is around .7 - 0.9, I hope he has not
> missed the window as it went up from 0.2 the past year. Why do some
> Doctors wait????

My total guess is ignorance first, specific case-driven factors second.
I KNOW why my idiot VA PCP watched in silence as my annual PSAs went
roughly 1, 2, 4, 6, 9 before alerting me to it, thus effectively
killing me. YOU obviously know much more about this stuff than he did,
and his clientele are mostly old men.

I.P.

[Steve Kramer]

The side effects that I suffered were manageable. I guess I say that so
often about SRT and ADT that some may overestimate my constitution. The
fact is most SEs of most treatments seem manageable if you hit them head on.

As to radiation, I drank lots and lots of water, walked two miles every day,
and slept nine hours every night. I ended up experiencing mild fatigue,
manageable hemorrhoids (which probably began before the radiation), and at
the very end, mild urinary tract irritation. The fatigue lasted months; the
hemorrhoids weeks; and the irritation days after the radiation ended.

That said, my PSA dropped from 0.75 to 0.21 in nine months and began to rise
thereafter. By 12 months, I was on ADT. In my case, I guess you could say
it bought me a year but was otherwise a failure.

As I try to recall anecdotal evidence of successes in this newsgroup, it
seems that most here do not last much longer than 12 months post radiation.
But then cured patients tend to drift away from our little club.

Finally, while we have seen lots of people who have suffered biological
failure after SRT, and have to acknowledge at least a few successes, we have
not seen very many who have had severe, treatment-ending SEs.



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




"frank curtis" wrote in message
news:[email protected]..

On Nov 2, 11:01 am, "I.P. Freely" <fugeddabou...@noway.nohow> wrote:
> In the
> Do I sound cynical? Good, because I become more so with every new study


I.P. I'm with you on this and share your skepticism (cynicism...) for
refusing to buy into SRT, especially after reading those reports of
underreported and undesireable SE's. (Of course, I haven't really
read any posts from this group that confirm actually experiencing
those nasty SE's, so they may be like everything else in this disease,
the luck of the draw.)
But, since your psa is rising and, arguably, is now in the range where
"something" has to be done to treat it, what other option are you
considering?

[I.P. Freely]

Steve Kramer wrote:
> The side effects that I suffered were manageable.... The
> fact is most SEs of most treatments seem manageable if you hit them head
> on.

Darn right, especially if they're temporary. We should be able and
willing to put up with almost anything for a few weeks or months if the
payoff is significant and likely.

> As to radiation, I drank lots and lots of water, walked two miles every
> day, and slept nine hours every night. I ended up experiencing mild
> fatigue, manageable hemorrhoids (which probably began before the
> radiation), and at the very end, mild urinary tract irritation. The
> fatigue lasted months; the hemorrhoids weeks; and the irritation days
> after the radiation ended.

That doesn't sound bad at all from a thousand miles away. The part I
envy and can't associate with is the 9 hours' sleep. Whether fresh or
extremely fatigued, my insomnia prevents that. I used to drive for 10-12
hours straight wide awake, and never EVER fell asleep without lying down
in a bed and deliberately going to sleep. The past few years my sleep
has gotten so bad I can't drive for an hour or read a book for long at
home without whiplash. If an itchy 'rhoid woke me up at night, my sleep
would often be over for that night.

> That said, my PSA dropped from 0.75 to 0.21 in nine months and began to
> rise thereafter. By 12 months, I was on ADT. In my case, I guess you
> could say it bought me a year but was otherwise a failure.

Therein is a huge, vital question I want an oncologist to clarify for
me, with some proof. *Does that PSA drop/reset buy us anything more than
a number on a lab slip?* Dozens of studies imply or state in B&W that it
does not (unless it actually cures us). Unless it happens to cure us
(which cannot happen if we have any occult/hidden mets outside the
fossa) -- even when our PSA goes and stays undetectable for several
years -- we still get spots on a scan, then symptoms, then death "right
on schedule", as though we never even bothered with the radiation.
That's why so many studies conclude with something like, "SRT often
appears moot unless you count its toxicity".

That's like saying Russian roulette is moot until you count getting shot
occasionally.

> As I try to recall anecdotal evidence of successes in this newsgroup, it
> seems that most here do not last much longer than 12 months post
> radiation. But then cured patients tend to drift away from our little club.

The problem with that is the question that only 2-10 years can answer
even partially: am I cured, or is there simply a lower number on my lab
slip for the time being? The former is worth some toxicity; the latter
probably isn't worth a sprained finger.

> Finally, while we have seen lots of people who have suffered biological
> failure after SRT, and have to acknowledge at least a few successes

Successes ... unless it returns with a vengeance 6-10 years later as
though we had used a bandaid rather than SRT. That really has a lot of
study authors scratching their heads: How the hell can we tell in
advance which pts will gain no benefit, vs a few years of lower lab slip
numbers, vs 20 years without cancer? The closest predictor to an answer
I can find in the literature, so far, is immediately-pre-SRT PSADT. If
it's over about 10 months, a man our age probably don't need no
steenkin' SRT ... unless, of course, he's lucky enough that all his
cancer is in the fossa and is killed by the radiation.

> have not seen very many who have had severe, treatment-ending SEs.

Yes, that would be Grade 4 toxicity, which is quite rare during SRT. The
hidden problem is that, although still very rare, it can surface up to a
couple of years later. It's rare enough that, even though severe, it
probably shouldn't be a decision factor except as a tie-breaker, maybe
more for a single old man with no close family support.

> PSA OCT 2000 @ 46
> Biopsy NOV 2000 3+4=7, T2c
> RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins

Your case and mine were very similar except for your 4+3 where I drew a
pair of 4s. My primary onc says the impact of Gleason scores are not a
continuum, that a 7 is a very different animal from a 6 and 8-10 is very
different from a 7.

> PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years

With your extremely short PSADT, you were beyond fortunate that ADT
worked so well for you.

I.P.

[Steve Kramer]

"I.P. Freely" wrote in message news:7sdtq.15936$[email protected]..

The part I
envy and can't associate with is the 9 hours' sleep. Whether fresh or
extremely fatigued, my insomnia prevents that. I used to drive for 10-12
hours straight wide awake, and never EVER fell asleep without lying down
in a bed and deliberately going to sleep. The past few years my sleep
has gotten so bad I can't drive for an hour or read a book for long at
home without whiplash. If an itchy 'rhoid woke me up at night, my sleep
would often be over for that night.

==> Don't know how you would then prepare for SRT with regard to additional
rest. Maybe with SRT you will rest for the first time in your life.


Your case and mine were very similar except for your 4+3 where I drew a
pair of 4s. My primary onc says the impact of Gleason scores are not a
continuum, that a 7 is a very different animal from a 6 and 8-10 is very
different from a 7.

==> I have to admit that I was not responding to your case directly. Your
pair beats the hell out of my 2-card straight. But then, perhaps, it's only
the fact of the four that gets us on the wrong side of statistics.



With your extremely short PSADT, you were beyond fortunate that ADT
worked so well for you.

==> No argument here.


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]

Steve Kramer wrote:
> "I.P. Freely" wrote
>> If an itchy 'rhoid woke me up at night, my sleep
>> would often be over for that night.
>
> Don't know how you would then prepare for SRT with regard to
> additional rest. Maybe with SRT you will rest for the first time in your
> life.

I have every reason to expect just the opposite, since RT GI/GU
morbidities start at about Grade 2, maybe Grade 1, to bother us 24/7,
and since fatigue makes my sleep worse.

> perhaps,
> it's only the fact of the four that gets us on the wrong side of
> statistics.

That's been my guess, but is contradicted by both the statistics and my
oncs' telling me that 8 is in a whole different prognostic and
biochemical arena than 7 and that 8 behaves much more like 10 than it
does 7.

I.P.

[I.P. Freely]

frank curtis asked"
> But, since your psa is rising and, arguably, is now in the range where
> "something" has to be done to treat it, what other option are you
> considering?

After my recent consult with a senior rad onc with a large cancer
center, I sent my 7-year uro onc from the same cancer center a list of
the most salient points of that consult, a brief analysis of how my
cancer numbers and existing morbidities meshed with those points, and my
near future treatment plan. That plan is:



"1. Hold off on SRT.
2. Keep reading, looking for anything that increases SRT’s therapeutic
ratio, particularly greater evidence of significant mets and PCSM
(prostate cancer specific mortality) delay w/SRT and my numbers.
3. Make a definitive decision before my PSA hits 0.4, preferably much
earlier, like next fall.
4. Pass on ADT until PSA hits 10, where pathology lurks.
5. Monitor and plot PSA and its dynamics very closely to detect
detrimental departures from expectations.
6. Pursue holistic measures such as diet (mine’s very nearly ideal
already), low-risk special foods such as pomegranate juice, maybe a few
supplements recommended by credible sources.
7. Hit the gym and the water for physical and psychological boost."


He had strongly encouraged me to pursue SRT with adjuvant ADT, so I was
surprised how thoroughly and definitively he agreed with that plan.
Realize that it applies expressly for my case, particularly with my long
PSADT and my present GI and GU morbidities. Men with recurring PSA with
a shorter DT, especially under 6 months, are in a very different boat,
as are men without a head start on GI/GU morbidities.

I.P.

[Alan Meyer]

I.P.

I know very well that anecdotes don't generalize, but I couldn't help
noting that in the last few days two men, Vince and JerryW, posted
so-far successful SRT results without significant side effects.

I know that you've read studies that have made you very skeptical about
SRT and radiation in general, and I can't fault your effort to get the
best scientific information that you can get and to put more reliance on
published studies than anecdotes. However it is my, admittedly
unquantified, sense from reading this and another newsgroup for many
years that the number of radiation horror stories isn't out of line with
the number of surgery horror stories. S**t happens even with good
doctors, but in general, it seems like good surgeons and rad oncs are
mostly not unduly harming their patients.

In particular, I can't recall anyone in this newsgroup posting a story
about being permanently chained to a toilet by their radiation
treatment. I'm certain that it has happened, but I don't think it's as
common as you think it might be.

Alan

[I.P. Freely]

Alan Meyer wrote:
> I.P.
>
> in the last few days two men, Vince and JerryW, posted
> so-far successful SRT results without significant side effects.

And recently the onc who recommended SRT for me emailed that his latest
SRT pt is in dire straights despite a routine case. Then there's the guy
whose doctor can see his bladder simply by peering into his anus as he
bends over. And the one who can't get far enough from a toilet to travel
to the hospital three hours away for corrective surgery.

And the beat goes on. That's why I deliberately pay virtually no
attention to anecdotes. Their primary contribution is to confirm the
existence of fringes of the bell curves, which is much like signaling a
right turn when there's no one in sight; it conveys no useful information.

> I know that you've read studies that have made you very skeptical about
> SRT and radiation in general

Notice that every time, I emphasized "with my numbers and present
morbidities". That's critical, regarding SRT's expected benefits and
toxicity. Also realize that my skepticism, *with my numbers*, isn't
self-generated; the skepticism, not just the toxicity data, comes
straight from many studies' peer-reviewed published conclusions. One
very common example: “A benefit in overall survival [of SRT for pT3N0
pts] has not been demonstrated�, Mendenhall, 2009, "Postprostatectomy RT
for PC".

> that the number of radiation horror stories isn't out of line with
> the number of surgery horror stories.

That may be, but my emphasis is on post-RP SRT, so RP is no longer an
option. For primary treatment, where all options are still on the table,
one of the foremost RP vs RT selection criteria my various oncs gave me
was, "Which SE risk worries you more ... urinary or bowel incontinence?"

Freaking *DUH!* ;-)
And speaking of which ... Alan wrote:

> S**t happens even with good
> doctors, but in general, it seems like good surgeons and rad oncs are
> mostly not unduly harming their patients.

"Mostly ... unduly ... harming" ... those are mighty subjective and
highly personal terms there, pardner. I prefer to deal in data in such
important matters. Toxicity example: 3D-CRT had ≥2,000% worse late grade
≥2 rectal toxicity than conventional RT. (Lee, 2005, "Comparison of late
rectal toxicity from conventional versus 3D-CRT for PC: analysis of
clinical and dosimetric factors). Benefit example: "No demonstrated
advantage to SRT with an isolated BCR before a documented local
recurrence with G≥8 OR SVI", Cadeddu, Partin, Walsh, Johns-Hopkins,
"Long-term results of RT for BCR following RP".

> In particular, I can't recall anyone in this newsgroup posting a story
> about being permanently chained to a toilet by their radiation
> treatment. I'm certain that it has happened, but I don't think it's as
> common as you think it might be.

All I have to go on is hundreds of studies, from sources ranging from
the foremost individual institutions to huge metastudies of all studies,
with close attention to type and modernity of radiation, plus an even
more important though somewhat subjective factor: my definition of a
"toilet tether". IMO, anyone with urgent diarrhea (is there another
kind?) 3-4 times a day qualifies. Far from being an outlying horror
story, that (Grade 1) or worse (Grade ≥2) is documented in 40-66% of RT
pts by the 5-year point. Worse yet for any man with any SEs from his RP
is that a) those statistics are based on men with no RP SEs and b) SRT's
toxicity is additive to, not independent of, prior SEs.

I believe each individual should weigh his own life and lifestyle
priorities and criteria, his individual case's numbers, and his existing
GI/GU morbidities against all the relative data he's willing to mine
regarding SRT's benefits and toxicity. Anything less heightens his risk
of disappointed expectations and avoidable second guessing.

I.P.

[Gourd Dancer]

"Then there's the guy whose doctor can see his bladder simply by peering
into his anus as he bends over. And the one who can't get far enough from a
toilet to travel to the hospital three hours away for corrective surgery."

=========> I'd like to communicate with these guys. Do you have contact
information?

GD

"I.P. Freely" wrote in message news:t24Hq.1151$[email protected]..

Alan Meyer wrote:
> I.P.
>
> in the last few days two men, Vince and JerryW, posted
> so-far successful SRT results without significant side effects.

And recently the onc who recommended SRT for me emailed that his latest
SRT pt is in dire straights despite a routine case. Then there's the guy
whose doctor can see his bladder simply by peering into his anus as he
bends over. And the one who can't get far enough from a toilet to travel
to the hospital three hours away for corrective surgery.

And the beat goes on. That's why I deliberately pay virtually no
attention to anecdotes. Their primary contribution is to confirm the
existence of fringes of the bell curves, which is much like signaling a
right turn when there's no one in sight; it conveys no useful information.

> I know that you've read studies that have made you very skeptical about
> SRT and radiation in general

Notice that every time, I emphasized "with my numbers and present
morbidities". That's critical, regarding SRT's expected benefits and
toxicity. Also realize that my skepticism, *with my numbers*, isn't
self-generated; the skepticism, not just the toxicity data, comes
straight from many studies' peer-reviewed published conclusions. One
very common example: “A benefit in overall survival [of SRT for pT3N0
pts] has not been demonstrated�, Mendenhall, 2009, "Postprostatectomy RT
for PC".

> that the number of radiation horror stories isn't out of line with
> the number of surgery horror stories.

That may be, but my emphasis is on post-RP SRT, so RP is no longer an
option. For primary treatment, where all options are still on the table,
one of the foremost RP vs RT selection criteria my various oncs gave me
was, "Which SE risk worries you more ... urinary or bowel incontinence?"

Freaking *DUH!* ;-)
And speaking of which ... Alan wrote:

> S**t happens even with good
> doctors, but in general, it seems like good surgeons and rad oncs are
> mostly not unduly harming their patients.

"Mostly ... unduly ... harming" ... those are mighty subjective and
highly personal terms there, pardner. I prefer to deal in data in such
important matters. Toxicity example: 3D-CRT had ≥2,000% worse late grade
≥2 rectal toxicity than conventional RT. (Lee, 2005, "Comparison of late
rectal toxicity from conventional versus 3D-CRT for PC: analysis of
clinical and dosimetric factors). Benefit example: "No demonstrated
advantage to SRT with an isolated BCR before a documented local
recurrence with G≥8 OR SVI", Cadeddu, Partin, Walsh, Johns-Hopkins,
"Long-term results of RT for BCR following RP".

> In particular, I can't recall anyone in this newsgroup posting a story
> about being permanently chained to a toilet by their radiation
> treatment. I'm certain that it has happened, but I don't think it's as
> common as you think it might be.

All I have to go on is hundreds of studies, from sources ranging from
the foremost individual institutions to huge metastudies of all studies,
with close attention to type and modernity of radiation, plus an even
more important though somewhat subjective factor: my definition of a
"toilet tether". IMO, anyone with urgent diarrhea (is there another
kind?) 3-4 times a day qualifies. Far from being an outlying horror
story, that (Grade 1) or worse (Grade ≥2) is documented in 40-66% of RT
pts by the 5-year point. Worse yet for any man with any SEs from his RP
is that a) those statistics are based on men with no RP SEs and b) SRT's
toxicity is additive to, not independent of, prior SEs.

I believe each individual should weigh his own life and lifestyle
priorities and criteria, his individual case's numbers, and his existing
GI/GU morbidities against all the relative data he's willing to mine
regarding SRT's benefits and toxicity. Anything less heightens his risk
of disappointed expectations and avoidable second guessing.

I.P.

[I.P. Freely]

Gourd Dancer wrote:
> "Then there's the guy whose doctor can see his bladder simply by peering
> into his anus as he bends over. And the one who can't get far enough
> from a toilet to travel to the hospital three hours away for corrective
> surgery."
>
> =========> I'd like to communicate with these guys. Do you have contact
> information?

I'll try to chase a name down. I talked to a number of people, looked at
a few online forums, and met for several weeks with a local cancer
support group during that time frame and don't recall for sure who told
me about it. It could even have been here. Given some of the problems
people discuss in online forums, I'd guess you could Google such cases
pretty readily. I've been amazed at how calmly some people discuss
horrible medical problems, but the discussions explain how and why they
do: they're either 1/3 our age and know they face another 50 years with
congenital GI/GU problems or they've lived with them for 60 years and
are pretty much used to it. There are some absolutely awful gut issues
that make life very VERY difficult for many millions of people most of
their lives. Looking at their nonchalant conversations about managing
celiac and permeable gut disease takes the whine right out of me.

I.P.

[Dan Schumacher]

"Gourd Dancer" <!!!noreply!!!@gmail.com> wrote in message
news:jclsjo$li6$[email protected]..
> "Then there's the guy whose doctor can see his bladder simply
> by peering into his anus as he bends over. And the one who
> can't get far enough from a toilet to travel to the hospital
> three hours away for corrective surgery."
>
> =========> I'd like to communicate with these guys. Do you have
> contact information?
>
> GD
>
>

GD,

I may be one of the folks that IP was referring to although my
side effects are from initial external beam radiation (79gy)
rather than salvage radiation. The actual wording on the recent
flex sigmoidoscopy report states:
" A medium-sized fistula was found in the distal anterior rectum
in an area of abnormal, hyperemic, inflamed edematous mucosa.
The bladder was able to be seen through this fistulous
connection."

This fistula allows some urine to enter the rectum and exit
through the anus. As a temporary measure I have a catheter tube
into my bladder through my abdomen. So most urine goes into a
bag.

I expect to have some surgery in late January or early February
to have a flap of tissue taken from my thigh and placed in the
area of the rectal ulcer that resulted from the radiation. They
also plan to take some tissue from inside my mouth to use as a
plug for the fistula.

Feel free to contact me directly if you need more info.

Regards, Dan

[Alan Meyer]

On 12/19/2011 8:18 AM, Dan Schumacher wrote:
>
> "Gourd Dancer" <!!!noreply!!!@gmail.com> wrote in message
> news:jclsjo$li6$[email protected]..
>> "Then there's the guy whose doctor can see his bladder simply by
>> peering into his anus as he bends over. And the one who can't get far
>> enough from a toilet to travel to the hospital three hours away for
>> corrective surgery."
>>
>> =========> I'd like to communicate with these guys. Do you have
>> contact information?
>>
>> GD
>>
>>
>
> GD,
>
> I may be one of the folks that IP was referring to although my side
> effects are from initial external beam radiation (79gy) rather than
> salvage radiation. The actual wording on the recent flex sigmoidoscopy
> report states:
> " A medium-sized fistula was found in the distal anterior rectum in an
> area of abnormal, hyperemic, inflamed edematous mucosa. The bladder was
> able to be seen through this fistulous connection."
>
> This fistula allows some urine to enter the rectum and exit through the
> anus. As a temporary measure I have a catheter tube into my bladder
> through my abdomen. So most urine goes into a bag.
>
> I expect to have some surgery in late January or early February to have
> a flap of tissue taken from my thigh and placed in the area of the
> rectal ulcer that resulted from the radiation. They also plan to take
> some tissue from inside my mouth to use as a plug for the fistula.
>
> Feel free to contact me directly if you need more info.
>
> Regards, Dan

Yikes!

Best of luck with the surgery Dan.

Alan

[I.P. Freely]

Ah, yes ... that sounds like the case I was referring to. Thanks for
saving me a lot of work finding it ... and for offering to discuss it
with GD.

My slightly educated guess is that SRT bears a stronger threat of SEs
and of treatment failure than primary RT, for several reasons including:
• The rad oncs have a specific, well-mapped, well-characterized target
-- the prostate -- with primary RT. With post-RP RT, there's no target,
just "the place the prostate used to be".
• They often use fiducial markers embedded in the prostate to provide
precise, 4-dimensional (space and time), real-time, active tracking to
help the irradiate the thing they want to irradiate (the prostate) and
miss everything else, despite varying bowel and bladder contents, coughs
or twitches, etc. Few rad facilities bother with fiducial markers
because there's not much to mark.
• Even if the post-RP patient is dry and fully functional, some of the
studies say outright that SRT is more likely to produce morbidities in
pts with any prior abdominal surgery, just because organs may not be
where they should be and scar tissue behaves differently than healthy
tissue. (I've had four abdominal surgeries.) My local rad facility
scanned my pelvis to be sure my resected (halved) bowel hadn't settled
into the volum vacated by my prostate. (It had not.)
• On top of that, SRT's SE profile is In Addition To any preexisting
GI/GU morbidities. I.e. and e.g., the same salvage radiation that added
pads to a dry guy would mean full diapers to a guy already using pads,
and preexisting hemorrhoids greatly exacerbate the likelihood and
severity of rectal proctitis (which includes a whole list of rectal
problems much more onerous than the innocuous little word, "proctitis"
might convey before one looks it up.)
• IIRC, primary RT, because they have a discrete target, uses
significantly fewer Gys than SRT. Many studies show that RT SEs go up
quickly with the higher Gys necessary to achieve SRT's goals.
Statistically (i.e., on a large scale), SRT still presents a major
dilemma between enough Gys to do much good and too much to avoid severe
SEs.

I.P.

Dan Schumacher wrote:

> I may be one of the folks that IP was referring to although my side
> effects are from initial external beam radiation (79gy) rather than
> salvage radiation. The actual wording on the recent flex sigmoidoscopy
> report states:
> " A medium-sized fistula was found in the distal anterior rectum in an
> area of abnormal, hyperemic, inflamed edematous mucosa. The bladder was
> able to be seen through this fistulous connection."
>
> Feel free to contact me directly if you need more info.
>
> Regards, Dan

[Dan Schumacher]

"Alan Meyer" <[email protected]> wrote in message
news:[email protected]..
> On 12/19/2011 8:18 AM, Dan Schumacher wrote:
>>
>> "Gourd Dancer" <!!!noreply!!!@gmail.com> wrote in message
>> news:jclsjo$li6$[email protected]..
>>> "Then there's the guy whose doctor can see his bladder simply
>>> by
>>> peering into his anus as he bends over. And the one who can't
>>> get far
>>> enough from a toilet to travel to the hospital three hours
>>> away for
>>> corrective surgery."
>>>
>>> =========> I'd like to communicate with these guys. Do you
>>> have
>>> contact information?
>>>
>>> GD
>>>
>>>
>>
>> GD,
>>
>> I may be one of the folks that IP was referring to although my
>> side
>> effects are from initial external beam radiation (79gy) rather
>> than
>> salvage radiation. The actual wording on the recent flex
>> sigmoidoscopy
>> report states:
>> " A medium-sized fistula was found in the distal anterior
>> rectum in an
>> area of abnormal, hyperemic, inflamed edematous mucosa. The
>> bladder was
>> able to be seen through this fistulous connection."
>>
>> This fistula allows some urine to enter the rectum and exit
>> through the
>> anus. As a temporary measure I have a catheter tube into my
>> bladder
>> through my abdomen. So most urine goes into a bag.
>>
>> I expect to have some surgery in late January or early
>> February to have
>> a flap of tissue taken from my thigh and placed in the area of
>> the
>> rectal ulcer that resulted from the radiation. They also plan
>> to take
>> some tissue from inside my mouth to use as a plug for the
>> fistula.
>>
>> Feel free to contact me directly if you need more info.
>>
>> Regards, Dan
>
> Yikes!
>
> Best of luck with the surgery Dan.
>
> Alan

Alan,
Thanks for the good wishes. I am very comfortable with my two
colo-rectal surgeons and my urologist. I have only met with the
plastic surgeon that will do the flap surgery once and don't have
a feel for him yet. Hopefully, enough time will have passed
since they did the "temporary" colostomy" so that the rectal
ulcer will have healed enough for the flap to be successful.
Fixing the fistula is my primary concern right now.

Regards, Dan

[I.P. Freely]

Alan Meyer wrote:
> Dan Schumacher wrote:
>>
>> I expect to have some surgery in late January or early February to have
>> a flap of tissue taken from my thigh and placed in the area of the
>> rectal ulcer that resulted from the radiation. They also plan to take
>> some tissue from inside my mouth to use as a plug for the fistula.

>
> Yikes!

A classic case of why, when trying to predict our treatment response
expectations, we must discount outlying cases like Dan's and that of my
local friend who never regained his testosterone after SRT-adjuvant ADT
but has no SEs therefrom: all they do for the next guy is define some
possibilities with virtually no prognostic value. However, both extremes
are tough to ignore.

Picture my fingers in my ears as I sing "La La La La La La" and think
M U S T I G N O R E A N E C D O T E S ...

Good luck, Dan. The best concrete consolation I can offer is that severe
radiation burns like yours and worse are surfacing in large numbers. In
a study of 117 women irradiated for cervical cancer, 47% incurred
chronic radiation enteritis or proctitis and 17% of those died within 10
years *independent of cancer recurrences*. Modern prostate RT technology
is reducing the percentage of results like yours or worse from double
digit percentages to single digit percentages, but significantly
increases the incidence of lesser but still disabling GI/GU morbidities
from a minority of SRT cases to a majority of cases, according to many
studies.

Not one of the many oncologists I've visited volunteered those data.
Only two admitted it when I confronted them with my findings, taken from
the very source used by virtually every doctor around the world: PubMed.

I.P.