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Medical Forum / Diseases and Disorders / Prostate Cancer / October 2007

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Have decided on "watchful waiting"

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Sy - 19 Oct 2007 11:51 GMT
I was recently Dxiagnosed with Prostate Cancer.  I will be 60 in
January.

Gleason Score-6 (3+3)
PSA-3.17
Stage -T1c
PSA-Doubling-22 months

I was originally hoping to have CyberKnife treatment but my Insurance
carrier (Oxford Health Plan) would not cover it.

I saw my Urologist Oncologist this afternoon in order to start
preparing for Low Dose Brachytherapy (radioactive seeding).  We then
spoke about a 2 month regimen of Eligard prior to Seeding.

Then I asked him point blank "Do you think it would be imprudent to
keep an eye on my PSA level and do an 'active surveillance' approach.
 He said that my numbers (PSA, Gleason & Staging) were low enough that
"it would not be imprudent" as long as I got a PSA test every 3 months
and understood that if there was a "significant" increase in PSA
velocity that I would then have to undergo some type of treatment.  I
also pointed out that I was aware that this approach is typically used
on older men but that I'd seen recent studies with men 55-60.  He said
he was aware of a recent Swiss study like that.

I made sure to stress to him that I was not trying to twist his arm or
make him tell me what he thought I wanted to hear.  He told me that it
would be ok to take this approach and to keep an eye on it.  Best news
I've had in months.

Not only will I keep an eye on it I will keep all 4 of my eyes on it.

Sy
jloomis - 19 Oct 2007 13:39 GMT
I am not sure what you are waiting for?
Biopsy shows cancer.
Waiting for an increase in PSA would indicate a spread of cancer.
The cancer is much more difficult to slow down or stop when it is spread.
I do understand your position and diagnosis, but do not understand waiting.
Kind of like watching a slow fuse to a bomb.
I do wish you the best and respect your choice and anyone's choice in this
battle.
john loomis

> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in
> January.
[quoted text clipped - 29 lines]
>
> Sy
Sy - 19 Oct 2007 16:26 GMT
Thanks for your support but I have weighed the personal pros and cons,
have access to an excellent Urologist-Oncologist and we came to this
decision.

There is a large body of evidence indicating that this is a rational
approach for "selected" patients.  

Sy

> I am not sure what you are waiting for?
> Biopsy shows cancer.
[quoted text clipped - 39 lines]
> >
> > Sy
safire - 19 Oct 2007 19:42 GMT
> Thanks for your support but I have weighed the personal pros and cons,
> have access to an excellent Urologist-Oncologist and we came to this
> decision.
>
> There is a large body of evidence indicating that this is a rational
> approach for "selected" patients.  

Additionally, I believe the guidelines published by the National
Comprehensive Cancer Network support your decision. If you haven't checked:

http://www.nccn.org/patients/patient_gls/_english/_prostate/contents.asp

I asked my uro the same question last year and he responded like yours
did ("it is not at all imprudent"). He did, however, suggest a larger
biopsy (2x 12 vs. 2x 3 before). That yielded a higher Gleason of 4+3.
Subsequently I had a DaVinci RP. The cancer is gone, but one year later
I still suffer from dull abdominal, bladder and urethral pain daily,
while potency has not returned. Not clear what causes the pain, but your
decision to postpone action indefinitely certainly won't have any
adverse side effects.

> Sy
Steve Kramer - 20 Oct 2007 00:23 GMT
> Thanks for your support but I have weighed the personal pros and cons,
> have access to an excellent Urologist-Oncologist and we came to this
> decision.

Oops!  I make it a point not to comment once a decision is made.  Disregard
my last post.

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            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 10/11/07
Non Illegitimi Carborundum

Sy - 21 Oct 2007 13:04 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Hi Steve,

That's ok and I think it's both considerate and wise to keep in mind
that these decisions are very definitely a compilation of having
prudently studied the subject matter oneself, having consulted with
professionals and then factoring in the personal risk/reward ratios as
to which direction to go.

Seems there are one or two people here who aren't "satisfied" with that
and are basically humorless busybodies demanding that you "prove" your
rationale to them.

I think that one in particular believes himself to be a highly regarded
Prostate Oncologist and has likely booked a flight to Stockholm in
order to be ready to accept his forthcoming Nobel Prize in Medicine.

There are medications for people like that :)

Thanks,

Sy

> > Thanks for your support but I have weighed the personal pros and cons,
> > have access to an excellent Urologist-Oncologist and we came to this
> > decision.
>
> Oops!  I make it a point not to comment once a decision is made.  Disregard
> my last post.
Steve Kramer - 21 Oct 2007 17:55 GMT
> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 6 lines]
> professionals and then factoring in the personal risk/reward ratios as
> to which direction to go.

Thank you, but it is not as much a consideration as it is a principle by
which I try to stick.  I hope you did not consider it an endorsement of your
decision.

Personally, I trust implicitly that you have prudently studied the subject
matter and consulted with professionals and read that which we recommended.
There is no doubt that you then factored in personal risk.  I apparently
scared you so bad that you chucked the studied matterial, professional
advice, and annecdotal opinion and are now risking the quantity and quality
of your life out of gut-wrenching fear and attacking your supporters (see
below) like a mad dog who they are trying to feed.

> Seems there are one or two people here who aren't "satisfied" with that
> and are basically humorless busybodies demanding that you "prove" your
[quoted text clipped - 5 lines]
>
> There are medications for people like that :)

You have been between kind and neutral to me, but you have been instulting
to my friends, antisocial to the rest, and generally, metaphorically, a
cancer to this support group.  If you want someone to tell you, "Good
decision, Sy.  It's best to let sleeping dogs lie." you've come to the wrong
place.  We want to help you, not enable you.
Gonas - 21 Oct 2007 23:57 GMT
Not clear what causes the pain, but your
decision to postpone action indefinitely certainly won't have any
adverse side effects.

but possibly the one major side effect ..... sorry just had to respond...
had radical/pc 3 yrs ago; still reading .001 no side effects whatsoever.

>> [[ This message was both posted and mailed: see
>>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 34 lines]
> decision, Sy.  It's best to let sleeping dogs lie." you've come to the
> wrong place.  We want to help you, not enable you.
djperry42@sbcglobal.net - 19 Oct 2007 13:48 GMT
Sy, it's really difficult to assess what the best choice is.  My
numbers were similar to yours at the same age except my PSA max was
4.9.  I chose surgery in 2003 and all is well (inspite of the side
effects) although I probably still fret over the upcoming PSA's as
much as you will.  I can't help but think that there must have been
thousands of men in past years who had our numbers and never knew they
had prostate cancer (pre-PSA days), men who went on with their lives
and eventually died of something else.  It's a real dilemma for those
of us in those middle ranges.  All the best with your choice.
Dave Perry

> I was recently Dxiagnosed with Prostate Cancer.  I will be 60 in
> January.
[quoted text clipped - 29 lines]
>
> Sy
Dave P - 19 Oct 2007 15:37 GMT
This isnt' mine but a person from California. He has done what he
calls agressive watchful waiting now for over 12 years. He was
diagnosed with a PSA of 7.6 it went down to 2.1 then up to 19. It is
currently 17  Gleason 3+3=6. He swears by the protocol. I do some of
these things but not all. Just wanted to pass this along. Good luck.

The Protocol for Watching Waiting
1.)  Vegetarian type low fat diet:  No meat, poultry or dairy
products.  Occasional fish but I minimize bottom fish & shellfish. I
Avoid processed foods when possible, and eat primarily organically
grown produce.
2.) Low Caffeine / Minimal Alcohol :  I consume pomegranate juice
daily. I also try to drink wheat grass at least once per week. And
always drink filtered water. My body goes not get along with caffeine
so I do not drink green tea. I do however drink rooibos tea, this tea
has higher concentrations of antioxidants and phyto-phenols, but is
caffeine free.
I drink a very occasional beer or red wine.
3.) Meditation: I practice Qi Gong regularly, not only a healing art
but a way to reduce stress and gain inner peace. (Qi Gong is an
ancient healing technique from China, it is a combination of
accupressure, breathing techniques, and movement exercises designed to
restore energy as well as heal the body.)
4.) Exercise:  Moderate daily exercise.  Walking or running for at
least one half hour everyday.  A weight training program is practiced
every other day emphasizing flexibility.
5.) Support Group Participation:  Cancer patients in support group
settings live twice as long as non-members. I started my own local
group with emphasize on "healthy life-style"
6.)  Aggressive Vitamins & Supplements: See below.
7.) High Performance Hygiene Regimen:  Designed to remove stress from
the immune system and allow it to concentrate on healing. Kenneth
Seaton, PhD has designed a hygiene program that reduces bacteria from
the high concentration areas: under the fingernails, the tear ducts,
and nasal passages. The program not only has kept me from colds, flu,
and allergies, but has also increased my serum albumin level, a
barometer of longevity.( Average American albumin level is 4.3, cancer
patients generally have albumin levels of less than 4.0. My albumin
level 3 years ago was 3.6, my latest albumin test showed a level of
4.4)
8) Personalized Metabolic Nutrition: I have been tested to determine
which of the four Metabolic Types I am. I consume foods appropriate to
my metabolic type. I am a Group I, sympathetic type, this means that I
metabolize carbohydrates well, but have difficulty with fats and
proteins. This is a common type for people diagnosed with cancer. I
have been eating for my Metabolic Type for over five years, with good
results.
9) Enhancing the Immune System: My primary goal has been to bolster
the immune system and make it as strong as possible. I take a number
of immune enhancing supplements.
SUGGESTIONS:
Minimize:
Candy        Sugars        Fats        Poultry        Processed food
Sweets        Caffeine    Tap water    Meat                Dairy products

Maximize:
Organic Produce    Beans         Fermented Soy Products (miso, tempeh)
Whole Grains        Brown Rice    Fresh Vegetables and Juices

Supplement & Vitamin List:
DAILY
Multi-Vitamin                                                   Daily
Healthy Prostate & Ovary Formula                9 caplets per day, 3
at each meal
Artemisinin                     2 capsules, 2 times per day / away from food
Bakers Chocolate - no dairy or sugar        1oz. daily
Vitamin D-3                    2000 IU
Curcumin/Tumeric                                         2000 mg
Ten Mushroom Combination                          12 capsules, 4 at
each meal
Selenium                            200mcg
Arctic Omega 3 Fish Oils                                1000 mg
Modified Citrus Pectin (Pectasol)        12-18 capsules per day
Vitamin C                    6000 mg
Maca Root Extract                As per label instructions
Lycopene                    15 mg
Boswellia / AKBA                1-2 capsules daily

Supplement Strategy:
I have learned over the years that I get best results with my prostate
related supplements when I take them on an intermittent basis. I
rotate a number of prostate specific men's supplements on a regular
basis.

The Keys:
Have faith
reduce stress levels
eat a healthy low fat, whole grain vegetarian type diet
get a minimum of eight hours of sleep a night
never get complacent, even after treatment
do your due diligence and homework before you make a protocol decision
Alan Meyer - 19 Oct 2007 23:53 GMT
> This isnt' mine but a person from California.

<... extraordinary list of supplements elided ...>

Your friend must be one of the healthiest cancer patients on
the planet.

Still, his current PSA of 17  is scary.  I had thought that watchful
waiting isn't usually recommended for patients with PSA > 10.
I also wonder if his Gleason 3+3 is a recent reading from an
expert lab, or is just what he was told in a long ago biopsy.

Although he's done well so far, if I were him I might establish
a clear cutoff point and say, "when my PSA reaches this number,
I'm going to get treatment."  There is a danger that each time
he is checked he'll say, "it only rose 2 points since the last
treatment, then, now it's only another 3 points up."  And before
he realizes it, he has mets.

> ...
> Supplement Strategy:
> I have learned over the years that I get best results with my prostate
> related supplements when I take them on an intermittent basis. I
> rotate a number of prostate specific men's supplements on a regular
> basis.
...

Now there's an innovation.  I wonder why he does that.

   Alan
Bob C. - 19 Oct 2007 15:50 GMT
> Not only will I keep an eye on it I will keep all 4 of my eyes on it.
>
> Sy

My cancer was not discovered until it was beyond being curable. I have
gone through a number of treatments knowing that a cure was not very
likely with current technology. You on the other hand, could likely go
through far fewer ordeals, and have far fewer side effects,  and be
cured!!!  Whatever you do, I hope that you do it before the cancer has
crossed the line between curable, and not. It might be very painful
someday to look back and know that if only you had reacted a year
sooner, a month sooner, you could have been cured. Best of luck to you,
I hope you have 100% success with whatever route you pursue. It is not
an easy decision, I know.
BH - 19 Oct 2007 16:15 GMT
Sy, all of us have had to make our own decisions about treatment based
on what we know and how we feel at the time.  While many in this group
would probably choose a different course of action based on what we
know about you, I'm sure we all respect your decision and wish you the
best.  Please continue to keep us informed of your PSA results and
know that we will continue to support you in your future decisions.

Burney

>I was recently Dxiagnosed with Prostate Cancer.  I will be 60 in
>January.
[quoted text clipped - 29 lines]
>
>Sy

Burney dot Huff at Mindspring dot com
gvk2six@yahoo.com - 19 Oct 2007 20:57 GMT
> I was recently Dxiagnosed with Prostate Cancer.  I will be 60 in
> January.
[quoted text clipped - 3 lines]
> Stage -T1c
> PSA-Doubling-22 months

> Then I asked him point blank "Do you think it would be imprudent to
> keep an eye on my PSA level and do an 'active surveillance' approach.
[quoted text clipped - 12 lines]
>
> Not only will I keep an eye on it I will keep all 4 of my eyes on it.

Sy,  it would be interesting to some of us with similar PSAs to know
why your 3.17 psa score led to a biopsy.   Could you include your
prior psa's over the preceding years.   Apparently you were about 1.6
22 months earlier.  So was the biopsy done entirely because of the
acceleration "jump" in psa rather than the 3.17 number?

I'd say your "watchful waiting" is very reasonable.  Or perhaps it
should be called
EXPECTANT MANAGEMENT OR ACTIVE SURVEILLANCE as they do at the John
Hopkins program.
http://urology.jhu.edu/prostate/advice1.php

They have some interesting criteria and surveillance protocols they
follow.

My last psa dropped to 1.6 after having a  blip up to 2.9   I feel
lucky no one wanted to rush me into a biopsy or I may well be in your
position of uncertainty after getting a 3+3=6 score.   I have no doubt
there is some PCa in my prostate now,(unknown Gleason)  but as long as
my PSAs stay low and slow I'm just going to keep doing my own version
of "surveillance" along with some of the "reasonable" dietary
changes.  I don't believe in the kitchen-sink approach to natural
cures, supplements, etc.

MY list of "reasonable" changes with some scientific basis include the
following.  I might add that almost all of them are good for general
health, especially cardiovascular health, even if they don't slow PCa
that much, and far more men, even those with PCa, are gonna die of
heart disease rather than PCa.

1. Fairly to very low animal product diet except for some fish such as
salmon
2. Fairly high fruit and veggie intake (especially the cruciferous
ones)
3. Some soy, tofu and soymilk,  but not overboard
4. Teas, green and black
5. Vit-D3 supplement (or more sunlight....)
6. Pomegranate juice pure 8 ounce per day
7. Curcumin 500 mg per day  (only about double what people get daily
in India in their diet)
8. Keep body weight low/lean
9. Exercise

The only one that costs much is the Pomegranate juice (about $1.00 per
day from Trader Joes)  Two reports address its affect on PSA doubling
time which may interest you.  I figure if it slows doubling time post-
surgical,  then why wouldn't it slow doubling time pre-diagnosis?

Well, good luck.  Keep reading the news.  If the weight is way up
there, slowly bring it down.  It seems the  more I read on many cancer
issues,  excess weight is one of the main things associated with
"inflammation" leading to some cancers beginning and advancing.
Even the famous Dr. Walsh is apparently coming to the "inflammation"
conclusion and cites the following researchers in a CNN interview
http://transcripts.cnn.com/TRANSCRIPTS/0301/04/smn.22.html
http://urology.jhu.edu/newsletter/prostate_cancer75.php
http://www.webmd.com/prostate-cancer/news/20070315/0besity-may-up-prostate-cance
r-deaths


gvk2six
Sy - 20 Oct 2007 03:14 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

In article

Yes, the biopsy was done because of the doubling and not the PSA level
of 3.17.  I have a very sharp Internist who suggested I see a Uro..

The Uro gave me a DRE and felt nothing but said I should have the
ultrasound biopsy.  Figured he needed it for his kids' tuition.  As it
turns out I was happy he did it.

Yes, "Active Surveillance" is a much better term.  Despite that people
tend to freak out when you tell them that's your strategy.  

Sy

<1192823857.161263.14860@e34g2000pro.googlegroups.com>,

> > I was recently Dxiagnosed with Prostate Cancer.  I will be 60 in
> > January.
[quoted text clipped - 80 lines]
>
> gvk2six
MAS - 19 Oct 2007 23:39 GMT
Sy, follow whatever treatment plan to desire. It's your plan and no one
else's.

I do have a question/cpmment. Seems that your approaches have centered
around non-invasiveness; Cyberknife where there is no long-term result known
and Watching Waiting/Active Surveillance where there is a known long-term
result. At the surface the choicees seem in conflict. Is non-invasive
treatment the most important thing in your life today?

What is known, is that you have cancer. How you deal with that fact it is
your business. At some point a micro-fiber of cancer will leave the
prostrate bed and float around most likely through your vascular system or
lymphatic system until it lands and grows. The result then is Advanced
Prostate Cancer.

Some day your Gleason will not be 3+3, but rather 4+3 or 3+4, etc. The
higher the Gleason, the greater the percentage that a micro-fiber spreads
your cancer.

Note that I have not mentioned PSA. PSA score is only an indicator. I am
reminded of a good friend and co-worker who at age 40 insisted on a PSA test
and again at 41. PSA went from 1.3 to 2.7 in a years time. The resulting
biopsy was Gleason 3+4.

I remember when my Radiation Oncologist told me that his only concern was
that a micri-fiber (and by the way, I mean not so small that in present day
medicine is not viewable) escaping. The odds were 92% that it had not.
Twelve months later we found out that it had escaped. So I was in the eight
percentile group.

Recurrent cancer is usually attributed to the above process, regardless of
the length of time it floats around in the body. I suggest that you ask your
treatment specialist what you odds are.

I wish the best for you and many years of good health. Take care.

Gourd Dancer

> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in
> January.
[quoted text clipped - 29 lines]
>
> Sy
Sy - 20 Oct 2007 03:14 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

What is it about some people who in one breath say something like "I
respect your treatment plan and you are the only one to decide" and in
the next breath feel a need to construct a sinister "possible" future
scenario?  

I think your comments are quite simple minded.  Unfortunately you were
in the 8% group.  In my mind 92% are damn good odds especially given
the vagaries and SE associated with various more invasive techniques.
I don't plan to sit on my a.s and will be re- assessing my situation at
regular intervals.

Sy

> Sy, follow whatever treatment plan to desire. It's your plan and no one
> else's.
[quoted text clipped - 67 lines]
> >
> > Sy
Steve Kramer - 20 Oct 2007 12:38 GMT
> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 9 lines]
> I don't plan to sit on my a.s and will be re- assessing my situation at
> regular intervals.

I think it might have more to do with the vagaries of newsgroup mechanics.
You come here looking for opinions and you make a decision.

Somewhere between, Gourd Dancer and I were still caught in the 'seeking
opinions' stage, or at least I was.  Once I read further, I clearly told you
to disregard my previous email.  Gourd has been around here a long time and
I think I can assure you neither of us are going to say, "I told you so" if
you end up with advance prostate cancer.

We're just trying to help, Sy.  And you are awful quick to pull the trigger
on your perceived grievances.  Gourd's comments were not simple-minded.
They were based on what he's learned from having this disease for almost six
years and sticking around this support group helping neophytes like
yourself.  You and he are about the same age, but in when it comes to the
disease he is vastly your elder and you ought to learn to respect your
elders.
rosbif - 20 Oct 2007 13:49 GMT
>[[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 3 lines]
>the next breath feel a need to construct a sinister "possible" future
>scenario?  

Congratulations on your decision. In fact the mood here - to my mind
anyway - has softened a lot since 3 years ago when talk of WW was
treated either as heresy or the gibberings of a madman.  In the
meantime, WW has gained some respect as a strategy for 'selected'
patients although clearly in this ng, most have had or are about to
have treatment so that's what gets talked about the most.

Please don't read anything sinister into this, but I'm interested in
the arithmetic of doubling times of long-term watchful-waiters. Does
anyone know if typical PSA dynamics have been charted for this
category of patients?  Are doubling times expected to remain
approximately constant for the duration of the progression of the
disease?  
If constancy was expected, a 15-year period without treatment and a 2
year doubling time would result in 7.5 doublings and multiply your
current PSA reading by a factor of approx 180, which would put your
current PSA of 3.17 at nearly 574 at age 74.
I realise this is a gross oversimplification.  Do doubling times
contract or expand? Do they perhaps follow no clear pattern, with
periods of rise alternating with phases of fall?  Is there any data at
all on this?

Sy, I hope you will return as often as you like to let us know how you
are getting on - PSA results and all - to throw some light on this
mystery, and also on your attitude - changing or otherwise - to your
WW plan.  I know you've ruffled a few feathers here, but frankly that
is a trifle when compared with our collective need to figure out what
is going on with this wretched disease.  Every little helps.  Should
you decide to back out (I did), it would be no less interesting to
those who are thinking of taking the WW route themselves to know
something about your changing perceptions, and the critical points for
your evolving strategy.
Very best of luck, I hope WW allows you to die of something other than
PCa, but even if the plan falters, I hope no one here will say "I told
you so!".
Keep in touch.
rosbif - 20 Oct 2007 14:15 GMT
>which would put your
>current PSA of 3.17 at nearly 574 at age 74.

I forgot, in your case, 22 month doubling.
15 years gives 8.18 doublings
2^8.18 = 290+
PSA 3.17 becomes 920 in 15 years.

There's no science here at all, just arithmetic.  The figure is
probably entirely bogus!
ronju99 - 20 Oct 2007 14:22 GMT
rosbif,
This article recommends intervention of a PSDT <3 years and surveillance
> 3 years.
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6X10-4DJ3X47-1&_user=1
0&_coverDate=01%2F01%2F2005&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000
050221&_version=1&_urlVersion=0&_userid=10&md5=c6a4a799a2f92ccb5bf543a147aeb666


Ron S.
rosbif - 20 Oct 2007 14:47 GMT
>rosbif,
> This article recommends intervention of a PSDT <3 years and surveillance
>> 3 years.
>http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6X10-4DJ3X47-1&_user=1
0&_coverDate=01%2F01%2F2005&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000
050221&_version=1&_urlVersion=0&_userid=10&md5=c6a4a799a2f92ccb5bf543a147aeb666

>
>Ron S.

Thanks Ron, interesting.  
Over 15 years, a 3-year PSADT does make a huge difference to the
cumulative arithmetic when compared with the 2-year. (5 doublings
turns 3.17 into 100+)

Most notable in this study is that once you eliminate all those with
PSADT<3 years, the remainder have a median DT of 7 years with almost
half of them with a better than 10-year doubling.

That would be nice!!
MAS - 20 Oct 2007 20:42 GMT
Sy, sometimes the truth is simple. I can assure you that cancer and its
treatment is not a vagary. It is neither, unpredictable nor erratic. It is
not like the weather, economy, or a blond. It is what it is.

I do not have to construct any sinister scenario. It is what it is.

I truly wish you the best and would never be critical of your treament
choice. It is what it is.

Gourd Dancer

> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 90 lines]
>> >
>> > Sy
Sy - 20 Oct 2007 22:11 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Gourd,

I have a background in science and some sophistication with statistical
analysis.  When I started to study the topic of Prostate Cancer I never
in my wildest dreams would have believed that there would be such a
seeming lack of unamimity in this field.

About the only thing there seems to be consensus on is where the
prostate is located in the body!  Far from being simple (and I am an
adherent of Occam's Razor) this field , because of the difficulty of
parsing out "what variable is doing what and by how much and for how
long and at what rate?" etc.etc..  is inherently unsimple to put it
mildly.  That's not even considering the subjective and personal
calculus that the patient has to integrate in their choice of a
treatment plan.

Regarding the blonde though, your point is well taken :)   And by the
way what's a "Gourd Dancer"?

Thanks,

Sy

> Sy, sometimes the truth is simple. I can assure you that cancer and its
> treatment is not a vagary. It is neither, unpredictable nor erratic. It is
[quoted text clipped - 101 lines]
> >> >
> >> > Sy
MAS - 21 Oct 2007 08:06 GMT
Sy,

It's an Indian thing. I am a member of the Tia-Piah Society. Thanks for
asking. I can best put it this way:

The Tia-Piah Society is a Kiowa Veterans Society. The Dance is the
Tia-pea-go. A Chief's Dance symbolizing that he is ready to go, ready to
die, Tia-pea-go.
- Attwater Onco

Spawned on the field of blood,
Colored by the Tdiepei-ai-gah, skunkberry red,
Taught by Red Wolf's vision, his dance
The Whip, Rope, and Bugle proclaim us.
- James Auchiah

Gourd Dancer

> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 150 lines]
>> >> >
>> >> > Sy
Sy - 21 Oct 2007 13:04 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Gourd,

Very interesting.

Question: I assume "Attwater Onco" a person's name?  I

f it is it's more than a little ironic that I read it as short for
"Oncologist".

Sy

> Sy,
>
[quoted text clipped - 168 lines]
> >> >> >
> >> >> > Sy
MAS - 22 Oct 2007 03:46 GMT
LOL, Onco is a Kiowa family name. His first name was Attwater. No
correlating to Oncologist. Wonder how the name would have been perceived if
it came from his brother, Perry.

> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 204 lines]
>> >> >> >
>> >> >> > Sy
DominicM - 24 Oct 2007 12:35 GMT
> [[ This message was both posted and mailed: see
>    the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 136 lines]
>
> - Show quoted text

Your comment on lack of unamimity is I think the most frustrating part
of this disease. For me when I was 49 with a Gleason 8 at diagnosis
there was no uncertainly.  I wanted and needed to be treated. But even
then there were a myriad of options and conflicting opinions. Now I
face another conumdrum, after RP and Radiation my PSA is rising and
<4mo doubling time  and no mets :). There are no simple decision trees
for my profile. With a gleason 8 and fast doubling time active
surveillance does not seem like am option I want to pursue. I'll talk
to experts at other Nat'l Cancer Centers and then take action.

Any case good luck to you. You must have nerves of steel.
Alan Meyer - 19 Oct 2007 23:47 GMT
Sy,

It sounds to me like you know what you are doing and have
made an informed and intelligent choice.

Best of luck with it.

   Alan
Steve Kramer - 20 Oct 2007 00:20 GMT
> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in
> January.
[quoted text clipped - 3 lines]
> Stage -T1c
> PSA-Doubling-22 months

I here these things and wonder what is it the people wait for.  To be hit by
a truck?  Crash in an airplane?

I'm surprised you know the PSAD already, and I'd wager it will be decreased
next time you're tested.  But, even if not, do you feel better going into a
possible curative treatment with a PSA of 6.34 in 22 months and a Stage of
T2c?  Or T3c?

Your choice and if you enjoy gambling, maybe it's better than the SEs of
treatment.  But, one of the SEs is 'life'.

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            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 10/11/07
Non Illegitimi Carborundum

ronju99 - 20 Oct 2007 12:39 GMT
Hi Sy,
I noticed that you didn't mention in your signature your prostate volume ,
positive cores and percentages. You may get even more questions as to your
choice than you already have.

As far as the apparent conflict in ones opinions you mention, let me say
that because you are new to this disease and forum, you will eventually
realize that in time we all become family to some extent. We have been
there an done that and recognize that it is eventually your choice,
however if we believe that you may be taking the less prudent road then we
will inject our consul just because we really do care for anyone that finds
themselves in a similar situation.

One other observation I've noticed is that you appear more closed minded
than the ones on this forum. WE make suggestions and reference our
opinions based upon experts in the field. I haven't seen any references
from you supporting your position. You only state that you have reliable
uro and oncologist to lean on. If that is true, then why did you seek out
opinions from this forum of non-experts?

Also, thanks for the reply?

Ron S.
ronju99 - 20 Oct 2007 12:41 GMT
Hi Sy,
I noticed that you didn't mention in your signature your prostate volume ,
positive cores and percentages. You may get even more questions as to your
choice than you already have.

As far as the apparent conflict in ones opinions you mention, let me say
that because you are new to this disease and forum, you will eventually
realize that in time we all become family to some extent. We have been
there an done that and recognize that it is eventually your choice,
however if we believe that you may be taking the less prudent road then we
will inject our consul just because we really do care for anyone that finds
themselves in a similar situation.

One other observation I've noticed is that you appear more closed minded
than the ones on this forum. WE make suggestions and reference our
opinions based upon experts in the field. I haven't seen any references
from you supporting your position. You only state that you have reliable
uro and oncologist to lean on. If that is true, then why did you seek out
opinions from this forum of non-experts?

Also, thanks for the reply?

Ron S.
Sy - 20 Oct 2007 22:38 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Hi Ron,

I have read and studied this matter in great detail.  In fact friends
of mine had been telling me that I was "overdoing it" with my research.

I have read the literature from Johns Hopkins, Stanford, Mayo, NCI,
Walsh, Strum etc., and the most credible sources that are available.
Hundreds of them.  I always double check the veracity of studies to
confirm their objectivity as best as is possible.  One of my best
friends is an Internist at Georgetown and he has referred me to his
associates for their feedback.  That's not even counting my own Doctors
here in New Jersey.

That very intensive research coupled with my own very personal
determination of the risk/reward ratio involved brought me to my
decision, at least for the time being.  

I appreciate the feedback but I think I've been far from close-minded
having considered the entire gamut of choices from radical prost. to
"active surveillance".  Maybe you are confusing "close-minded" with
"resolute".

If you'd read some of my earlier points it might disabuse you of some
of your ideas.  Most of the feedback I've received on this decision of
mine has been quite supportive and understanding and didn't require an
"explanation" or my need to have to corroborate my "game plan".  I
reiterate what I've said above.  I wonder if in some respects the idea
of "active surveillance" really scares some people?

And while I appreciate your interest, do you really think that you know
better?  Would you like me to send you my biopsy slides for your
analysis (no pun intended)?

Sy

In article
<adb30b626ef2cef705f51d8c4399492c@localhost.talkaboutsupport.com>,

> Hi Sy,
> I noticed that you didn't mention in your signature your prostate volume ,
[quoted text clipped - 19 lines]
>
> Ron S.
ronju99 - 21 Oct 2007 00:01 GMT
The pun wasn't necessary, Your numbers particularly the positive cores and
percentages along with your doubling time was sufficient. What many of us
do here on this forum is learn more about this disease through our
research and the exchange of information from different members that also
have done quite a bit of independent research themselves. Probably
considerable more than even you have as many have been at it for a number
of years. Many have as much if not more credentials than even yourself.

When I say closed minded, I am referring to your lack of exchange with
members that make an attempt to communicate with you. We are NOT trying to
tell you what to do. But because you don't provide the sources for your
thought processes so others may view them, then how can anyone question
your rationale. It seems that if one was going to make a possible life
altering decision that he would want his bases for that decision to be
critiqued to avoid mistakes that may negatively effect future outcomes.

Also, we may be missing something in our own research and if you would
enlighten us it would allow us  to pass that info on to others.

I sent you a link reference positive cores and percentages from Pubmed but
never received any response from you.I can assume it wasn't relevant to
your case.

To sum up: You don't share any of your research that is relevant to your
case for scrutiny. However, you ask our opinions on the matter in spite of
all the research and experts at your disposal.
Also, maybe I don't get it but my reading of the posts shows just the
opposite. Most here don't support your decision for active surveillance.
Your doubling time is too short and your positive cores are 75% of one
side with 40%,60% and 80% respectively. That doesn't qualify you for
active surveillance. Every authority that I've read recommends treatment.
Of course you could show us otherwise. Help us learn as we try to help
you.

Ron S.
Sy - 21 Oct 2007 03:34 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Ron,

I am not writing a research paper for you and as such don't have to
give you citations to bolster my position and hence my personal
decision.

While I appreciate any well-intentioned feedback yours has a pedantic,
coercive and condescending tone that I find off-putting.  There is a
zealotry which seems inappropriate.

I find it quite interesting that you make a pretense of statistical
understanding yet you cite your own personal case and it's unfortunate
outcome as evidence of something, yet it is anecdotal and means very
little in a larger sense.  Anyone who has ever taken even an Intro. to
Statistics course know from day 1 that anecdotes mean nothing.  In
fact, anecdotes mean LESS than nothing.

Also, you might want to lighten up a little, apparently having  taken
offense at as mild and goofy a pun as one can imagine ("according to
your analysis") .

I think you should give yourself and this particular topic a rest.

Sy

<4704427b231d1bcb4277f4545a36d199@localhost.talkaboutsupport.com>,

> The pun wasn't necessary, Your numbers particularly the positive cores and
> percentages along with your doubling time was sufficient. What many of us
[quoted text clipped - 31 lines]
>
> Ron S.
rosbif - 21 Oct 2007 09:40 GMT
>Anyone who has ever taken even an Intro. to
>Statistics course know from day 1 that anecdotes mean nothing.  In
>fact, anecdotes mean LESS than nothing.

And yet you asked this question...

>Anyone have experiences with CyberKnife treatment?
ronju99 - 21 Oct 2007 13:20 GMT
Karl Menger states that; "Entities must not be reduced to the point of
inadequacy." and "It is vain to do with fewer what requires more."
Anti-razor

I am impressed by your eloquent use of the English language. What can I
say after being so thoroughly chastised.

Ron S.
Larry Sabo - 21 Oct 2007 13:51 GMT
>[snip] What can I say after being so thoroughly chastised.
>
>Ron S.

PLONK him, as I am about to do. He appears to be wasting his and our
time here, except that it provides him an opportunity to insult those
who try to offer help. I don't recall ever coming across anyone so
arrogant and obnoxious.

Larry
rosbif - 21 Oct 2007 16:50 GMT
>>[snip] What can I say after being so thoroughly chastised.
>>
[quoted text clipped - 6 lines]
>
>Larry

I'd have to agree.

I was wrong to give him the benefit of the doubt.
Sy - 21 Oct 2007 22:14 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Larry, I am not "trying" to insult anyone and appreciate any and all
feedback provided that it's presented  in a manner which itself is not
"arrogant" and which shows some respect for the person (me) who makes a
possibly life altering decision without having to require a doctoral
thesis to justify it.

Sy

> PLONK him, as I am about to do. He appears to be wasting his and our
> time here, except that it provides him an opportunity to insult those
> who try to offer help. I don't recall ever coming across anyone so
> arrogant and obnoxious.
>
> Larry
Sy - 21 Oct 2007 22:37 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

In article

That was Karl "Menninger" by the way.

Regarding the quote it seems to be saying what I have been saying from
the outset, that Prostate Cancer is quite complicated not simple.

Sorry for chastising you but can you understand that many of your
comments were badgering and condescending?  

What's with the heavy handedness about trying to make your point?  I'm
just a collection of "pixels" on your screen.  You don't know me so
what's with all the handwringing?

Why not just say "I believe Active Surveillance is not a wise course to
take" or something like that and be done with it.  

Sy

<2cd4bff234471ea46aa449854a5f912c@localhost.talkaboutsupport.com>,

> Karl Menger states that; "Entities must not be reduced to the point of
> inadequacy." and "It is vain to do with fewer what requires more."
[quoted text clipped - 4 lines]
>  
> Ron S.
ronju99 - 21 Oct 2007 23:54 GMT
You may want to Google "Karl Menger and "The Law of Miserliness." Born 1902
and died 1985.

Ron S.
ronju99 - 22 Oct 2007 00:45 GMT
You want heavy handiness. Occam's Razor is a principal that is often
paraphrased as, All things being equal, the simplest solution often tends
to be the right one. That is what you expounded. Anti-razors believe the
theory is TOO extreme or rash and have put forward other principals such
as Karl Mengers principal and another by Gottfried Liebniz that states,
"The variety of beings should not be rashly diminished."
How does this apply to our postings. You seem to be taking the simple
approach to your decision making and disregarding other relevant issues
that could make a profound difference in your decision making model that
could effect your future outcome.
I was only attempting to challenge your model. I now understand that it
was folly on my part.

As far as giving you my opinion on active surveillance. It would be
meaningless. Opinions are a dime a dozen. However, I made an attempt to
give you many references from the best minds in the field for your study.
This was done primarily before you had announced your decision.

Like I stated in an earlier post, once you join the club, we become
brothers of sort. That's why I was handwringing as you call it.

You haven't got it yet and you may never get it but in spite of that
here's hoping the best for you.

Ron S.
glassman - 21 Oct 2007 21:10 GMT
> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in
> January.
[quoted text clipped - 3 lines]
> Stage -T1c
> PSA-Doubling-22 months

   We all join in hoping for your success. Thanks for being our personal
guinea pig.  Let's hope it doesn't come down to a tougher surgery at 65,
with a more aggressive cancer to deal with.  Afterall isn't that the reason
we have the surgery early?  I had my beast removed 5 years ago at 53, and if
I had the chance to do it over, I'd do it again in a heartbeat.  Good luck
and keep us posted Sy.

Signature

JK Sinrod
www.SinrodStudios.com
www.MyConeyIslandMemories.com

Sy - 21 Oct 2007 22:14 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

I am absolutely astonished at some of the responses to my posting
regarding "watchful waiting".  Like this one-"Thanks for being our
personal guinea pig".   Wadda guy.  

I really think people like yourself are projecting their own dis-ease
regarding Active Surveillance.  If you didn't have the stomach for it
then maybe you had a major surgery you may not have required.  And,
your "beast" may be hiding somewhere too for all you know.  I don't
know your specific case and don't especially care.

Are you daring me to have a rad. prost., maybe?  That's what it
actually comes across as.  How puerile can you get.

You mean I'm more of a man if I go that route to deal with the "beast"?  
How ridiculous that on a board concerned with things of such gravitas
there are a few jerks like yourself making the kind of remarks which
you made.

Sy

> > I was recently Dxiagnosed with Prostate Cancer. I will be 60 in
> > January.
[quoted text clipped - 10 lines]
> I had the chance to do it over, I'd do it again in a heartbeat.  Good luck
> and keep us posted Sy.
glassman - 22 Oct 2007 03:19 GMT
> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 3 lines]
> personal guinea pig".   Wadda guy.
> Are you daring me to have a rad. prost., maybe?  That's what it
actually comes across as.  How puerile can you get.

You mean I'm more of a man if I go that route to deal with the "beast"?
How ridiculous that on a board concerned with things of such gravitas
there are a few jerks like yourself making the kind of remarks which
you made.

Sy

  You are way overreacting, maybe based on others posts?  I meant to say
thanks for you testing the waters, and showing us all the ongoing results of
your decision.  Others here over the years have chosen alternative paths
with my sincerest support. Your personal insults are uncalled for and
shortsighted.

Signature

JK Sinrod
www.SinrodStudios.com
www.MyConeyIslandMemories.com

Beverley - 21 Oct 2007 22:08 GMT
There are valid reason to do some watchful waiting. For most men it won't
hurt to spend a few weeks or even a month or two learning all they can about
prostate cancer, deciding on a treatment, and locating a doctor with whom
they feel comfortable.

Watchful waiting (active surveillance) will buy time if for some reason
treatment needs to be postponed because of other health problems.

WW can be an excellent way to deal with PC if someone is "elderly" and the
odds are greater that their life expectancy is less than the PC's.  Of
course elderly has taken on a whole new meaning lately, at least for me. The
older I get the more I find "elderly" folks with more energy then I have and
they are in very good health.

I have a friend whose husband is in the "watchful waiting" category and that
is because ALL biopsies have come back negative. His PSA bounces around and
is often temporarily lowered with a round of antibiotics. So yes, he's under
"active surveillance" and waiting for the shoe to drop. He's waiting for a
biopsy to come back positive and has been in this predicament for several
years now.

But watchful waiting for a healthy man with a positive biopsy is nothing
more than waiting for cancer to become advanced. Hedging bets that a heart
attack, stroke, or a truck doing 75 MPH hits first. When caught early PC is
very curable by a number of treatment options.

Yes, options. Pick your poison! Surgery is constantly improving and great
strides have been made using radiation (IMRT, brachy, cyberknife). We are
even seeing cryosurgery and some other new treatments surfacing. Nothing is
perfect. They all have some side-effects. But the ultimate goal is to stop
the PC. Life instead of a slow painful death.

Some men fear loss of erectile function. Right now, I know of no treatment
that can 100% guarantee that there will not be any loss of EF. No man wants
to lose his EF, but it can happen. How someone chooses to live without it is
a different matter and there are options to help overcome ED.

PC is treatable and a normal healthy male should be treated.
Bev

> I was recently Dxiagnosed with Prostate Cancer. I will be 60 in
> January.
[quoted text clipped - 29 lines]
>
> Sy
Alex - 22 Oct 2007 08:12 GMT
> There are valid reason to do some watchful waiting. For most men it won't
> hurt to spend a few weeks or even a month or two learning all they can
[quoted text clipped - 8 lines]
> more than waiting for cancer to become advanced. Hedging bets that a heart
> attack, stroke, or a truck doing 75 MPH hits first.

What an uncomfortable position I find myself in -- disagreeing with Beverly,
who has been a dear, supportive, informative and welcome member of this
online community, and agreeing with Sy, who seems to seize any opportunity
to behave like an ill-tempered boor.

Bev, active surveillance is not just for men who must postpone active
treatment, or who are betting that they'll be hit by a bus before they die
of prostate cancer.

It is also an option for men like myself who have low-grade disease and who
have made an informed decision to defer surgery or radiation because they
feel the risks of doing so are acceptable. (Note that I said "defer", not
"reject".)

I was diagnosed a bit over two years ago, at 61, with a PSA of just over 6
and a Gleason of 6 (3+3), with under 10% of cancer in just two of 14 cores,
confirmed by Johns Hopkins. It took two biopsies, and 26 needles, to find
those cancer cells. After I did nothing but change my diet and add the usual
supplements, my PSA declined a couple of points over the following year. I
then went on Proscar, which halved the PSA again, to about 2.

I'm in the care of a medical group that specializes exclusively in prostate
cancer, and my quarterly exams and extensive blood tests, plus the
delightful DRE, help them make their BMW payments. Twice a year I get nice
pictures of my prostate via color doppler ultrasound.

Right now I regard this as a reasonable strategy. If the PSA heads upward,
or other tests (the ultrasounds, a follow-up biopsy, etc.) suggest that my
cancer is getting feisty, I won't hesitate to get surgery. (I'm not a good
candidate for radiation, because I have a ridiculously large prostate, the
only above-average aspect of my male anatomy.)

Sy, I don't know if active surveillance makes sense for you. Others have
outlined the risks, and have noted that your numbers would seem to make it a
dicey choice. But hey, it's your prostate. Still, you might want to give
some credence to the chorus of folks who have found your messages
ill-tempered. As my father used to say, "If a guy tells you you're drunk, he
may be insulting you. If three guys tell you you're drunk, lie down --  
you're drunk!"

Alex
Sy - 22 Oct 2007 12:42 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Alex,

There seems to be an inordinate amount of self-righteousness and
badgering on this board that I have never seen anywhere else which
masquerades as "concern" when it is mostly from a few people who
believe themselves to be Prostate Oncologists with 25 or so years of
experience and would have you under their "care" so to speak if you
only let them.   They probably have a sign which says "M.D." outside of
their room at "the home".

Their is also this tendency to support one with "good luck on your
treatment decision" and then go into a ghastly harangue about the
"beast" lurking within and how it will decimate you as if I didn't
already have thought about that.  Some "support".

If you consider some of my replies "boorish" then you might want to
read the postings which precipitated my "boorish" replies.

As you say yourself:

"I'm in the care of a medical group that specializes exclusively in
prostate  cancer, and my quarterly exams and extensive blood tests,
plus the  delightful DRE, help them make their BMW payments. Twice a
year I get nice  pictures of my prostate via color doppler ultrasound."

In other words despite,  the fact that there is useful information to
be had here are you going to follow the "medical advice" here or that
of what your Medical Group as well as your own research suggests?  

Sy

B.T.W., I like your email name and understand it.  It 's actually very
appropriate.

> > There are valid reason to do some watchful waiting. For most men it won't
> > hurt to spend a few weeks or even a month or two learning all they can
[quoted text clipped - 50 lines]
>
> Alex
Sy - 22 Oct 2007 13:02 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

Beverly,

Thank you for sharing "The Truth" with ignorant boors like myself.
It's greatly appreciated.

What you might want to add to your repository of "The Truth" are the
recent studies from Japan and Switzerland about "Active Surveillance" .

Sy

> There are valid reason to do some watchful waiting. For most men it won't
> hurt to spend a few weeks or even a month or two learning all they can about
[quoted text clipped - 69 lines]
> >
> > Sy
safire - 22 Oct 2007 13:27 GMT
> Beverly,
>
[quoted text clipped - 3 lines]
> What you might want to add to your repository of "The Truth" are the
> recent studies from Japan and Switzerland about "Active Surveillance" .

And please take a look at
http://www.erspc.org/
and read publication #304 (Overdiagnosis and overtreatment of early
detected prostate cancer).

>> But watchful waiting for a healthy man with a positive biopsy is nothing
>> more than waiting for cancer to become advanced.

Or waiting for it not to advance, as pca is, unlike other cancers, in
most cases, slow-growing.
limey - 22 Oct 2007 19:56 GMT
> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 8 lines]
> .
> Sy

What you don't realize is that Bev is only too aware of the vagaries of
this disease.

It is obvious you have done a lot of reading at this early stage of your
disease and have consulted with friends and others in the medical
community.
I feel, therefore, that you have no need for the obviously inexpert,
unhelpful and uncaring opinions you have received from this newsgroup,
so suggest you leave and take your attitude somewhere else, where your
knowledge will be more valued.

Thank you - goodbye and good luck.

Dora (whose husband has very advanced Pca).
PM - 22 Oct 2007 21:08 GMT
>SNIP

> What you don't realize is that Bev is only too aware of the vagaries of
> this disease.
[quoted text clipped - 10 lines]
>
> Dora (whose husband has very advanced Pca).
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

and that might also say "Dora who doesn't appear to have much understanding
at all of what extreme stress can do to people".

I wonder if it might have occurred to you that this guy is struggling hard
to come to terms with what he knows and that one of the functions of a
*support* group is to give people space to get angry maybe, to lash out
maybe, and to find an understanding by whatever means of what they are
experiencing and have to live with - and maybe die with.

This is, by its title, a "support" group . .   and just maybe this guy needs
some support he gets from nowhere else - he could be single, alone facing
PCa,  and equally, we all know, just maybe, he could be a Troll . .   but in
my world there is room for Trolls. There is always the possibility the Troll
staggers across something which is the equivalent in his/her world of a
Damascene Conversion.

A support group can offer tolerance and understanding, sometimes gentle
sometimes firm criticism, but emphatically not, in the case of a cancer
support group, the way out of the door. That is deeply offensive in the
context of what we are all too aware of here, Dora

PM
limey - 22 Oct 2007 22:37 GMT
> and that might also say "Dora who doesn't appear to have much
> understanding at all of what extreme stress can do to people".

Forgive me, and I have no desire to prolong this, but I can assure you I
have a very clear understanding of what extreme stress can do.   My
husband is going through that; in my own way, I am also as I try my best
to support him.  I have had cancer myself, so can identify with that
stress.

I can understand that Sy is stressed.  I was upset that he brushed aside
so much help and advice, in such an abrupt way.   Not the way to arrive
in a newsgroup, where people are so supportive and concerned.

> I wonder if it might have occurred to you that this guy is struggling
> hard to come to terms with what he knows and that one of the
[quoted text clipped - 15 lines]
>
> PM

Thank you for your comments.  If I, too, have offended then I apologize.
I'm not usually so truculent but when he was so sarcastic to Bev, in
view of her recent loss it triggered my reaction.

Dora
Sy - 22 Oct 2007 22:54 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

In article

Hi PM,

Thanks very much for your kind words.  I can assure you that I am not a
"troller".  There are tens of thousands of Newsgroups out there and for
someone to pick one like this to get their jollies would be quite
weird.

I admit to having been somewhat sarcastic with some posters but I have
to say that some of the feedback I've gotten especially as it relates
to the topic of "prostate cancer and the individual patient's personal
treatment decisions" is truly remarkable to me in that it generates
what really seems to be some type of hostility or intolerance
masquerading as concern.

What I think happens in these boards is that there ensues (and I am
finding that there is no end of puns in this entire context) a "pissing
contest" :)  so to speak, where certain people come to believe that
they are actually medical gurus, Lasker or Nobel Prize winners and get
very defensive when their "expertise" or point of view is either
questioned or challenged.  

What is most striking to me however is their reaction to a very
personal, possibly life- changing decision which they have deigned to
analyze and make negative pronouncements about.  That is the part I
find very offensive.

Regarding Dora's generous invitation for me to get lost, I simply see
it as the type of myopia and intolerance you speak of in your posting

I want to thank you very much for your insightfulness and understanding
as well as your courage in making your points.  

Be ready for some shots from the crowd though!

Thanks,

Sy

<ZcOdnRDQ0PSvnoDanZ2dnUVZ8qSnnZ2d@bt.com>, PM
<sixup@mailDELETESPAM.com> wrote:

> >SNIP
>
[quoted text clipped - 36 lines]
>
> PM
glassman - 23 Oct 2007 02:38 GMT
> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 14 lines]
> what really seems to be some type of hostility or intolerance
> masquerading as concern.

  "Paranoia strikes deep in the heartland"

                                               CSN&Y

Signature

JK Sinrod
www.SinrodStudios.com
www.MyConeyIslandMemories.com

Sy - 23 Oct 2007 01:23 GMT
Hi Dora,

While I do appreciate your invitation to leave, I will continue to
"hang around" and continue to garner more information as well as
detractors :)

Sy

> > [[ This message was both posted and mailed: see
> >   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 23 lines]
>
> Dora (whose husband has very advanced Pca).
MAS - 22 Oct 2007 20:26 GMT
I really do not want to get into a wetting contest, hence this is my last
comment on the subject.

Age grouping of study that you refer to from Switzerland is 65 to 80. You
simply do not fall into that age group. However, you fall into this age
group on yet another study from Switzerland. (Remember the huidng principle
of all physicians - Do not harm.):

ScienceDaily (Oct. 11, 2007) - A study from Switzerland suggests that men
who have surgery for prostate cancer appear less likely to die of the
disease within 10 years than men who choose other treatment options,
especially if they are younger or have cancers with certain tumor cell
characteristics, according to a report in Archives of Internal Medicine.

Prostate cancer treatments are still being debated because they have not yet
been compared in a randomized trial, in which men would be randomly assigned
to one treatment or another, according to background information in the
article. "Therefore, treatment choice is strongly influenced by patient and
physician personal preferences and experiences," the authors write.

Arnaud Merglen, M.D., of Geneva University, Switzerland, and colleagues used
data from the Geneva Cancer Registry to assess all 844 patients diagnosed
with localized (not yet spread) prostate cancer in Geneva between 1989 and
1998. Of those men, 158 received prostatectomy, or surgery to remove all or
part of the prostate; 205 had radiation treatment (radiotherapy); 378 chose
watchful waiting, which entails active follow-up and treatment if the
disease progresses; 72 underwent hormone therapy; and 31 had another type of
therapy.

The average follow-up was 6.7 years (range zero to 15.8 years), and 47
patients (5.6 percent) left Geneva and the study before the study concluded.

"At 10 years, patients treated with radiotherapy or watchful waiting had a
significantly increased risk of death from prostate cancer compared with
patients who underwent prostatectomy," the authors write. Ten-year survival
rates from prostate cancer were 83 percent for prostatectomy, 75 percent for
radiotherapy, 72 percent for watchful waiting, 41 percent for hormone
therapy and 71 percent for other treatment. "The increased mortality
associated with radiotherapy and watchful waiting was primarily observed in
patients younger than 70 years and in patients with poorly differentiated
tumors," or tumors that have certain cellular characteristics and are more
likely to spread aggressively.

"Until clinical trials provide conclusive evidence, physicians and patients
should be informed of these results and their limitations," the authors
conclude.

Reference: Arch Intern Med. 2007;167(18):1944-1950.

This study was supported in part by a PROSPER (Program for Social Medicine,
Preventive and Epidemiological Research) grant from the Swiss National
Science Foundation.

Adapted from materials provided by JAMA and Archives Journals.

A STUDY IS JUST A STUDY. ONE CAN FIND A STUDY TO SUPPORT WHATEVER POSITION
ONE WANTS TO TAKE OR BETTER YET, FEEL COMFORTABLE WITH. This group takes a
position that whatever direction one takes is his personal choice and we
never find fault with the decision. This group also gives interested parties
the benefit of their decision and with a wide assortment of treatment taken
it is only food for fodder.

I am reminder each quarter, it's your choice; Eligard or a rising
PSA..........

GD

> [[ This message was both posted and mailed: see
>   the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 97 lines]
>> >
>> > Sy
Sy - 22 Oct 2007 22:54 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

MAS,

You are an intolerant jerk and busybody, and you have the totally self
-unreflective hubris to say:

"This group takes a position that whatever direction one takes is his
personal choice and we never find fault with the decision" and then
follows with some self serving harangue about the Swiss study and that
everyone can find a "study" to support their particular bias.  Very
perceptive Einstein and I suppose that you yourself are immune to any
"biases"?

Several folks here have been "finding fault with the decision" for
about the last week.  It's incredible to me.

And in a topic where there are endless puns to be made, I would like to
end with "Up yours".  

Sy

> I really do not want to get into a wetting contest, hence this is my last
> comment on the subject.
[quoted text clipped - 164 lines]
> >> >
> >> > Sy
gvk2six@yahoo.com - 23 Oct 2007 00:33 GMT
> [[ This message was both posted and mailed: see
>    the "To," "Cc," and "Newsgroups" headers for details. ]]
>
> > >> > Not only will I keep an eye on it I will keep all 4 of my eyes on it.
>
> > >> > Sy

Well I think Sy's choice is a good choice.  Sure, you can find studies
that suggest he loses a few percentage points at 10 years, but whats
the value possibly gained during those 10 years?
Quality of life and a very real chance to beat the slightly better
odds received from surgery.

Personal choice is what its all about.  Fully informed, eyes wide open
choices.  Go for it!
My dad survived 25 years (until age 88) after doing EBRT and DES at
age 63-64.  One of my closest friends mid fifties had Da Vinci 6
months ago.  Me, I'm trying to keep my psa under 3.0 via all means
possible.
But if and when I'm faced with Sy's choice I'm certainly gonna give
"active surveillance" serious consideration.
As a pre-diagnosis individual I've noticed that many people have a lot
invested in the path they've chosen because there is no going back.
So we find studies that back up our good decisions.

Some years ago on a mountain biking forum I brought up the fact that I
never wore gloves during the hot summer days, prefering dryer cooler
hands to the risk of falling and chewing up my skin.
Instead I put cut cotton ribbed sock tops around my grips attached
firmly with thick rubber bands.  I explained it worked wonderful and I
only suffered injury once or twice a year. I thought this was well
worth the risk for the cool feeling without gloves I enjoyed on all my
other rides.
Even though I explained the risk/reward ratio,  you'd have thought I
was suggesting riding without tires or handlebars according to the
onslaught I got in multiple posts. People suggested I was crazy and
reckless even if I  accepted the risk.
Well I've been riding for 6 years without gloves on hot days and
enjoying cool hands.  So far its been a worthwhile risk.

I think Sy's extra percentage risk acceptance is rather minor in terms
of percentage outcomes I've seen reported.
Certainly not black and white.

You know, along those lines, in some other forums, I've seen so many
people discuss the differences between various treatments of say,  75%
or 85% at ten years and then dismiss so many lifestyle/dietary changes
that might offer a portion of that difference and have zero downside.
I don't understand that, nor do I understand so many men who don't
even address risk reduction via diet and lifestyle until being
diagnosed in their mid 50s or 60s.  Granted I've had the benefit of
seeing PCa in my own family for decades, but most of the lifestyle
changes I've adopted are equally or more beneficial for cardiovascular
disease and yet done by so few.

Ok.....Sy,  I hope you'll keep us informed of your progress.  I'm also
curious about how many data points you had over what time period to
arrive at your 22 month doubling figure.

I mention this because as i said earlier,  I stopped doing PSAs for a
while and went from .8 to 2.9 over 5.3 years.  About .4 per year if
the incline was steady,  which it probably wasn't.
Still I waited another 6 months and then much to my relief I got a 1.6
So perhaps my 2.9 was a blip up via something.  I have some theories
which will be tested on my next test in December.  Hopefully 1.6 is
closer to my real number.
Not to get off the subject at hand too far, but I've been reading
quite a bit about asymptomatic prostatitis and the correlation to
higher psa test results.   And with me putting in 100 plus miles on a
bicycle seat every week,  it has occurred to me cycling could lead to
long term asymptomatic prostatitis even if one takes 2 or 3 days off
prior to testing.   For my 1.6 test,  I was on vacation without
cycling for several weeks.
But I also had changed my diet and and supplements during  the 6
months between tests.
My study of one continues at a snails pace.  The buggers are in there
(fairly sure)...  they may be (combined) Gleason  3, 4, 5 or even 6 at
some location,  but right now I don't want to know.  My own version of
"active surveillance"   Now hand me my pomegranate juice please :-)
Sy - 23 Oct 2007 04:15 GMT
[[ This message was both posted and mailed: see
  the "To," "Cc," and "Newsgroups" headers for details. ]]

> > [[ This message was both posted and mailed: see
> >    the "To," "Cc," and "Newsgroups" headers for details. ]]
[quoted text clipped - 8 lines]
> Quality of life and a very real chance to beat the slightly better
> odds received from surgery.

> Personal choice is what its all about.  Fully informed, eyes wide open
> choices.  Go for it!

You very clearly get the point.

> My dad survived 25 years (until age 88) after doing EBRT and DES at
> age 63-64.  One of my closest friends mid fifties had Da Vinci 6
[quoted text clipped - 5 lines]
> invested in the path they've chosen because there is no going back.
> So we find studies that back up our good decisions.

If your clinical and personal criteria warrant it then give Active
Surveillance a try and if that's your decision don't let the flak
you'll probably get here (as you said "that many people have a lot
invested in the path they've chosen") disabuse you of the idea.  

You'll probably get your share of disingenuous "support" accompanied by
photos of men with Stage IV M ll disease on their death beds in agony
or saggital sections of their "beast" crawling through and out their
guts like the creature in "Alien".  Ah yes, nothing like "support".  

> Some years ago on a mountain biking forum I brought up the fact that I
> never wore gloves during the hot summer days, prefering dryer cooler
[quoted text clipped - 50 lines]
> some location,  but right now I don't want to know.  My own version of
> "active surveillance"   Now hand me my pomegranate juice please :-)
chasjac too - 27 Oct 2007 12:21 GMT
Hello, Sy:

My, what a lively thread.  I am sorry I missed it as it was happening, and I
hope I can avoid stirring up any more polemics.

It just seems to me that active surveillance is an incomplete strategy.
What you've really done is to agree with your docs to postpone a treatment
decision until later on.  That's your choice, of course.  Indeed, when men
first come to this group after learning about their PCa, people here often
counsel them to take their time and research their options.  That's what I
heard from the folks here when I first cam a little over a year ago, and I
have in turn said it myself since, both here and elsewhere.

What I would think would be a more complete strategy that involves active
surveillance is this:  
(1) Agree with your docs to do the PSA test frequently; my understanding is
that you're doing this every 3 months.  
(2) Also establish some threshold values:  if your PSA or your PSA velocity
gets to some number, or if you become symptomatic, then you will abandon
the surveillance and get aggressive.  
(3) Why not also consider now what that more aggressive treatment might be?  

And I do not mean to stir up a divisive thread; I just didn't see this point
in the rest of the thread and thought it was worth offering.  

--charlie

Signature

6/2006 PSA 5.2, DRE suspicious
7/2006 Biopsy:  2 of 10 positive, Gleason 7(3+4)
11/2006 LRP:  Clear margins
PSA < 0.01 on 1/2007, 3/2007, 6/2007, 9/2007
so far, so good ...

Alex - 27 Oct 2007 22:31 GMT
> Hello, Sy:
>
[quoted text clipped - 27 lines]
>
> --charlie

Charlie, what you have described in the latter portion of your message is in
fact "active surveillance," as practiced by responsible PCa specialists. So
AS is far from "an incomplete strategy."

Alex
chasjac too - 27 Oct 2007 23:18 GMT
Hello, Alex:

Of course.  I was just hoping that Sy would ponder it a bit -- especially
point #3.  

--charlie

Signature

6/2006 PSA 5.2, DRE suspicious
7/2006 Biopsy:  2 of 10 positive, Gleason 7(3+4)
11/2006 LRP:  Clear margins
PSA < 0.01 on 1/2007, 3/2007, 6/2007, 9/2007
so far, so good ...


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