So I have Prostate Cancer. Now what?
Bill
and Gleason 3+3 6. (Boy I've learned a lot of jargon in the past week
and a half.) I want to do something about it now, now, now -- I'll bet
some of you are familiar with the feeling. But what to do?
I'm 62 years old. I've known *something* was wrong down there for the
past eight years or so -- PSA hovering around 4, trouble urinating,
occasionally getting up to use restroom in middle of night. My
urologist kept saying we need to watch this carefully, even though a
biopsy in 2006 was negative.
Then my physical in May of this year turned up the jump in PSA to 5.3,
and even though the doc was on the fence, I told him, "Look, if I have
cancer I want to know it," so he did another biposy. Still no cancer,
but this time some "troubling" tissue. We waited until November and did
a third biposy, and this time we hit paydirt, so to speak.
I have been reading Patrick Walsh's Guide to Surviving Prostate Cancer.
I've also had a long, helpful discussion with my urologist in his
office. He's a well-respected surgeon in Washington, DC, who has been
performing perineal prostatectomys for 40 years. He says that if he
were to have surgery, it's the procedure he'd choose.
But he also says he's not sure he'd choose to have surgery. He's sold
on brachytherapy now. He has recommended I chat with a specialist in
brachytherapy in nearby Virginia. My doc has given me lots of
literature on it, including papers on the subject he's published with
this guy in Virginia. When he first started describing brachytherapy I
had the impression that someone who's undergone the treatment remains
radioactive for the rest of his life. But no, the seeds have a brief
half-life, just enough time the doc explained to kill all the glands in
the prostate that can produce cancer while leaving the rest of the organ
-- the stroma -- intact. He said, and I quote, "when it's over, you're
cured."
Well, that path sounds tempting, but when I checked with my general
practitioner, she sounded concerned -- said she'd heard bad stories
about recurrences of cancer with brachytherapy. And of course, as my
urologist pointed out, once you've had brachytherapy, you really don't
want to consider having a prostatectomy. It can be done, but apparently
it's not desirable.
I live close to Johns Hopkins in Baltimore and I'm considering going
there for a second opinion. My urologist, who learned his stuff at Johns
Hopkins, says he's sure they'll recommend a radical prostatectomy which
involves cutting through the blood supply to the penis. He recommends
against this because of the danger of blood loss. He strongly prefers
the perineal prostatectomy method. Still, before I do anything, I plan
to go up to Johns Hopkins and listen to what they have to say.
My general practitioner recommended I visit a surgeon she knows who uses
the new "robot" which I assume is a laproscopic procedure. I haven't
studied up much on that yet, but I will get to it shortly. I have a
friend who had the "robot" surgery in Birmingham, AL, a couple of years
ago at the age of 50, and he's doing great now.
So here I am at Usenet, source of some of the best (and worst)
non-medical advice I've received over the years, looking for comments on
a subject far more important to me than which brand of RAM to buy or
which new movie to see. I'll be making calls this week to set up
appointments for second and third opinions.
But if anybody around has some advice based on first-hand experience,
I'm all ears. Thanks.
Bill
Steve Kramer
news:TpudnbqU8-UYPY_W...@giganews.com...
Bill,
Welcome to the club for which no one every desires to join. You'll find
here hundreds of caring men (and a few women) who will give you all the
support you ever need.
My first bit of advice, if you find it easy enough, is to slightly change
your handle. In the seven years I've been on this NG, we've had five
"Bills", and Bill Fla, bill h, Bill M, Bill N, Bill P, Bill Reynolds, bill
50, Billie, billnjackie, BillyBob, and Billy Gee.
: Got the bad news about a week and a half ago. It's early-stage, PSA 5.3
: and Gleason 3+3 6. (Boy I've learned a lot of jargon in the past week
: and a half.) I want to do something about it now, now, now --
And this would be my next advice. Learn what you can, now, now, now! Once
you learn all you can, make you decision and never go back.
: I'm 62 years old.
At 62 with a 5.3 PSA and Gleason 6 (you didn't state your stage), you should
have the whole gammut of alternative treatments at your disposal. The most
popular seem to be surgery and radiation. Surgery seems to have just
slightly better statistics than radiation, but not so much as to be, in my
humble opinion, a valid criteria unless it's a tie-breaker. Almost
everybody who has surgery chooses RRP (Radical Retropubic Prostatectomy) or
RLRP (Robot assisted Laproscopic Prostatectomy). Almost everybody who
chooses radiation go with Brachy (Brachytherapy) or EBRT (External Beam
Radiation Treatment), or EBRT's cousins.
When diagnosed in 2000 at Age 46, I had no choice. Radiation was not a good
idea for one so young. Furthermore, RLRP was not available generally
outside Texas and Michigan.
A couple of years after my treatment and lots of study, I decided that, if
given the choice again, I would choose surgery ala RLRP. But, very recently
we were introduced to a study that seemed to indicate that RLRP may not have
similar outcomes to RRP. Keep in mind that anything dealing with prostate
cancer takes a long, long time to determine actual results.
So, I reinforce - research, research, research.
: He says that if he
: were to have surgery, it's the procedure he'd choose.
: He's sold
: on brachytherapy now.
: "when it's over, you're
: cured."
: said she'd heard bad stories
: about recurrences of cancer with brachytherapy.
: My urologist, who learned his stuff at Johns
: Hopkins, says he's sure they'll recommend a radical prostatectomy
These are typical statements by otherwise intelligent men and women in the
medical field. That, "you're cured" message is simply irresponsible.
However, they are all trying to be helpful and in doing so have all given
you more reasons to find out for yourself.
: So here I am at Usenet, source of some of the best (and worst)
: non-medical advice I've received over the years, looking for comments on
: a subject far more important to me than which brand of RAM to buy or
: which new movie to see. I'll be making calls this week to set up
: appointments for second and third opinions.
:
: But if anybody around has some advice based on first-hand experience,
: I'm all ears. Thanks.
Mine is all in my signature, Bill. Dx and RRP at 46. Recurrence and EBRT
at 47. Recurrence and Lupron at 49. Recurrence and Cadodex at 52. So, RRP
wasn't successful for me, but I'm still alive and undetectable nine years
later.
--
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 undetectable since; last checked on 06/04/09
Illegitimati non carborundum
Steve Kramer
news:heuat6$b00$1...@news.eternal-september.org...
: my PSA's have been >0.1 for over 7 years. I am
: now almost 72.
Bill, ordinarily I would not suppose to correct another man on this NG, but
it is important that you know that Claude meant that his PSA has been <0.1
for over 7 years. That less than symbol is a pesky thing sometimes.
Steve Jordan
> Got the bad news about a week and a half ago. It's early-stage, PSA 5.3
> and Gleason 3+3 6. (Boy I've learned a lot of jargon in the past week
> and a half.) I want to do something about it now, now, now -- I'll bet
> some of you are familiar with the feeling. But what to do?
What to do? Study, learn, and take charge.
Here is my welcome for the new folks:
Welcome to the club no one wants to join.
I have some suggestions that will help to make well-informed
decisions.
Anecdotes contributed by other patients can be interesting, but
should never, ever, be relied upon as authority for one's own
decisions. In other words, what helps me might harm you and vice
versa.
"Find people who are more interested in helping you to learn than
teaching you what *they* think you need to know."
-- Robert Young, PCa Mentor
Phoenix 5
There is a lot to do.
(1) If applicable, I recommend having the biopsy specimens
examined by
a pathology lab that specializes in prostate cancer (PCa). Everything
that is done from here on depends upon the accuracy of the Gleason
scoring. Here is a list of such labs:
Bostwick Laboratories [800] 214-6628
Dianon Laboratories [800] 328-2666 (select 5 for client services)
Jon Epstein (Johns Hopkins) [410] 955-5043 or [410] 955-2162
Jon Oppenheimer (Tennessee) [800] 881-0470
Scott Lucia (303)724-3470
This is a "second opinion" and should be covered by
insurance/Medicare. The cost, last I heard, was about $500. More
if further tests, which might be prudent, are ordered.
The chosen lab can give instructions on shipment arrangements.
In civilized jurisdictions, those specimens are the property of
the patient and not the medic, not the lab. Sometimes it is
necessary to educate them on that point.
(2) The authoritative website of the Prostate Cancer Research
Institute (PCRI) at http://www.prostate-cancer.org/pcricms/
is an excellent beginning.
See also http://www.prostate-cancer.org/pcricms/node/126 if newly
diagnosed.
Some access to medics who specialize in treatment (tx) of PCa are
listed via this portal:
http://www.prostate-cancer.org/pcricms/node/38
If a particular medic is not suitable due to distance (but there
are men who travel thousands of miles for treatment) or
otherwise, there is no harm and much possible gain in simply
asking for a referral.
There are also men whose primary medic is some distance away, but
who receive their routine treatment (tx) near home.
(3) I heartily recommend this comprehensive text on PCa: _A
Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered
Patient's Guide" by medical oncologist and PCa specialist Stephen
B. Strum, MD and PCa warrior Donna Pogliano. It is available from
the PCRI website and the like, as
well as Amazon (30+ five-star reviews), Barnes & Noble, and
bookstores.
A lifesaver, as I very well know.
(4) Personal contact with other patients can be very helpful.
Local chapters of the international support group Us Too can be
found via their website at http://www.ustoo.com/chapter_nearyou.asp
Regards,
Steve J
"Empowerment: taking responsibility for and authority over one's own
outcomes based on education and knowledge of the consequences and
contingencies involved in one's own decisions. This focus
provides the
uplifting energy that can sustain in the face of crisis."
--Donna Pogliano, co-author of _A Primer on Prostate Cancer_,
subtitled
"The Empowered Patient's Guide."
Claude
"Steve Kramer" <skr...@cinci.rr.com> wrote in message
news:heuce0$s43$1...@news.eternal-september.org...
ron
Bill...With those stats you DON'T need to rush into anything. Talk to
docs, read books, educate yourself and collect data so that you will
have the best chance of making the best decision for yourself. When I
was diagnosed I knew nothing about PCa; I just figured that I had
cancer and would be dead pretty soon (as it turns out PCa is a
treatable disease with good long-term success rates for low-risk
men). I too had low-risk disease (my PSA had bounced around 4 for a
while and then spiked up to 6) and I opted for an open RP. Almost 7
years down the road and so far, so good. I didn't really educate
myself prior to my decision, but I've stayed along for the ride and
have picked up some information along the way. Here are a few
thoughts:
* At least 30% of the men diagnosed today will not require treatment
during their lifetime. The problem is - we don't really have a good
way to identify "those" men. One step you could take to try and get
more data on your situation would be to have a color doppler
ultrasound performed by Duke Bahn out in Califormia. If you just have
1 or 2 positive cores and it is a small cancer (volume wise) and not
near the prostate wall, then maybe actively monitoring the situation
might be preferable (certainly in terms of incontinence and erectile
dysfunction) than active treatment. From the few small studies done
thus far, delaying treatment for carefully selected men (google the
"Epstein criteria") does not result in to worse outcomes if treatment
is selected later on.
* What are your other stats? How many cores positive? Were your
slides read by an expert? PCa in the family? Any other comorbidities
(for example RT might be contraindicated for someone with diabetes)?
* As to treatment, if you can't travel then pick the best local PCa
doc no matter whether he does radiation or surgery - doctor experience
trumps methodology. If you can travel, then pick an artist for the
methodology you prefer. Personally, from studying the literature I
feel that RT or RP done by an artist will generally have similar
outcomes for both cancer treatment and side effects in the case of low-
risk men.
* I also feel that robotic treatment is heavily pushed because
hospitals need to recover their money. Some studies suggest that
robotic RP may have problems with tumors in the apical position (the
cdus would show you where your tumor(s) are located). Also, while
everyone expects robotics to produce similar outcomes to open surgery,
that has not been proven (robotic RP is still relatively new).
Robotics does produce less blood loss and shorter hospital stays, but
are you going in to get the cancer effectively treated or to get back
home quickly? Finally, there is a long learning curve for docs using
robotic equipment. Should you opt for robotic treatment pick a doc
who has done at least 500 robotic operations.
Hope this helps a bit. Again, the main thing is to take a deep
breath, don't rush, study and collect information on your
cancer...Best wishes and good health, ron
safire
> On Nov 29, 9:25 am, Bill <noaddr...@me.net> wrote:
>> Got the bad news about a week and a half ago. It's early-stage, PSA 5.3
>> and Gleason 3+3 6. (Boy I've learned a lot of jargon in the past week
>> and a half.) I want to do something about it now, now, now -- I'll bet
>> some of you are familiar with the feeling. But what to do?
> Bill...With those stats you DON'T need to rush into anything.
Bill, ignore Steve Kramer's post. Your choice is not between one form of
treatment and another, as he suggests. Read about the two major studies
published this summer, that Kramer continues to ignore. Read Ron's post
again. Read about overtreatment of PCa. Read about side effects. You may
not need any treatment at all with your numbers. Again, don't rush into
anything.
JK Coney
> and Gleason 3+3 6. (Boy I've learned a lot of jargon in the past week and
> a half.) I want to do something about it now, now, now -- I'll bet some
> of you are familiar with the feeling. But what to do?
>
What you think are past and present symptoms, probably are totally
unrelated. I know a guy that had 10 biopsy's until they finally got a
positive, and after surgery, he's doing fine now. What I'm trying to say is
that they might have missed it this time as well, and you would have done
nothing for another year without any different result. As for your doc's
recommendation, every specialist will favor what he does. You need to talk
to them all. When you find the right guy, you'll know it. Don't stop until
you do. Good luck!
--
JK Sinrod
myconeyislandmemories.com
Claude
"Gogarty" <Gog...@Clongowes.edu.ie> wrote in message
news:20091129-2...@Gogarty.news.bway.net...
<snip>
> Oh, one other thing. Make sure the surgeon who opens you up is also the
> one who closes you up. A friend was badly done at Jonhs Hopkins, of all
> places, when closing up was left to an inexperienced resident. He had to
> have remedial surgery later. He too is otherwise well after more than ten
> years.
That's a good point. The surgeon who did mine left a large teaching
hospital. He said that he liked to do the surgery himeself and "not clean
up someone else's mistakes". Experience and success, whether it comes in a
famous teaching hospital or a community hospital, is crucial in selecting a
surgeon.
I.P. Freely
impotence with no recurrence advantage. So far it's a fad I'd avoid for
those reasons.
� The blood loss issue is all but history for surgeons trained in
Walsh's RRP technique. I'd forego the perineal approach.
I.P.
chasjac
I am sorry to hear of your diagnosis. I was 50 when I first learned
that something was amiss, and spent about three months lurching toward
a diagnosis. I had a LRP (laparoscopic radical prostatectomy) in
November 2006 at Johns Hopkins, Pavlovich was the surgeon. All was
well and all is well so far, three years out.
LRP was right for me, but seeds (brachytherapy) or beam radiation or
perhaps some other treatment might be best for you. You are doing the
right thing by seeking out information and making a careful decision.
And as you can see, the folks on this NG are more than happy to be a
sounding board for you.
Good luck.
--charlie
Bill
The responses I've received throughout the day from my post here this
morning are just incredible. Thanks, everybody. Usenet comes through
again, and this time it's actually important. I can't put into words my
appreciation for the numerous thoughtful, helpful comments I've received
from all of you who've taken the time to respond. I'll certainly be
hanging around here for some time to come. Maybe someday I'll be able
to provide my own helpful comments based on a successful treatment. Let
us hope.
Again, heartfelt thanks to all of you. You've given me much to think about.
Bill
Bill
Thanks, I.P. Please -- why do you caution against perineal?
Bill
chasjac
About the blood loss: the surgeon who did mine said he uses the robot
to reposition the lights, but that he manipulates the cutting stuff
himself. So, I've never figured out if that qualifies as 'robotic' or
not. I thought the cutting was done with lasers, so that there was
little blood loss after the incisions.
I lost a couple of tablespoons of blood during the procedure,
according to the surgery report.
One side effect that my surgeon mentioned was that I might be more
prone to hernias afterwards. And sure enough ...
--charlie
Steve Kramer
news:20091129-2...@Gogarty.news.bway.net...
: There are three of us brothers, a year apart in birth dates. We also all
: three came down with prostate cancer, a year apart but not in birth order
: (I was second). One brother and I elected surgery. Regardless of all the
: arguments made for bracytherapy, watching and waiting, radiation, etc.,
: from some of the best at Johns Hopkis and Memorial Sloan Kettering. we
: just wanted that thing gone at whatever price. The third brother went for
: seeds. All three of us are fine. It's been eleven years in my case and PSA
: is not detectable. Despite reports here of people suddenly having relapses
: afrer ten and more years, I feel pretty confident that I can consider
: myself cured. (Knock, knock!)
Wow! Your family has had incredible luck, bad and good.
Just curious, would you mind telling me where they were treated?
Steve Kramer
: >Just curious, would you mind telling me where they were treated?
:
: Been so long I have forgotten. One went to Vermont on somebody's
: recommendsation (he lived in Washingtomn, DC). I went to Lenox Hill in
: Manhattan after checking out Memorial Sloan Kettering. Youngest with the
: seeds was in the Washington area. I will find out. Our ages are 79, 77 and
: 76.
Thanks, Peter.
Not even sure why I am curious. I guess due to your (pl.) successes. It's
remarkable.
I.P. Freely
> Thanks, I.P. Please -- why do you caution against perineal?
Memory test: I'm quit sure I read in Walsh that pelvic topography
presents the surgeon with such an access constraint that he can't pursue
the cancer as far as he can through a retropubic frontal assault, and
cannot access the nerve bundle well. This raises the odds of impotence
and could prevent access to escaped cancer.
I'll look in Walsh for verification.
Yup ... and much more, good and bad.
From Walsh, Second Edition paperback, pp 289-290:
Snippets include:
� 100-yo technique. IIRC, Walsh pioneered the RRP after your uro began
practice.
� Perineal has less bleeding [but modern retro bleeding is no longer a
problem if done properly].
� If the cancer has penetrated the capsule, the surgeon can't access it,
leaving escaped cancer cells untouched.
� "Reports" [he doesn't mention studies] that recurrence rates are thus
higher w/perineal.
� Thus if there's any chance the cancer has reached or escaped the
capsule wall, retro is in order. Many men have a laparoscopic lymph node
dissection in advance; positive results contraindicate perineal.
� "Some studies" show incontinence is less common w/perineal, but fecal
incontinence is more common. (In case you have any doubt which is worse,
put on a Depends diaper, squirt a little urine into it, wear it a while,
and observe the results. Now shoot some stool into it and wear THAT
around for a few hours and observe. That test will be very definitive.)
� Nerve bundle access is limited, increasing the incidence of impotence.
� The distorted body position in the stirrups often damages nerves
affecting leg and foot sensory and motor function; this damage is
*usually* temporary.
Sorta makes me wonder how current your uro is.
I.P.
Gloria (on the road again) Konsler
Don't panic. Take your time. Weigh all the advice you get and then make
the decision that's right for you.
My husband (64) was diagnosed last November with a Gleason 6. He did a LOT
of reading and finally decided on the robotic prostatectomy because he just
couldn't stand the thought of the cancer being in his body. Obviously this
may or may not be the best treatment for you personally.
The operation was performed on Monday in early May. (Turned out to be a
Gleason 3+4 when the pathology reports came back.) He came home on Tuesday
and went back to work the next Monday, never telling anyone he had had
cancer or the surgery. (He has a desk job.)
If you are anywhere near the Orlando, FL area, check out Dr. Vip Patel at
the Global Robotics Institute at Celebration Health. Dr. Patel has done over
2500 such surgeries and is one of the very best.
By the time of his 6 week check up, he had total bladder control and
impotency was not a problem either. We are very happy with the outcome of
the robotic surgery, but I need to repeat that it may or may not be the best
route for you to follow.
Best of luck and good health.
"Bill" <noad...@me.net> wrote in message
news:TpudnbqU8-UYPY_W...@giganews.com...
Bill Anderson
> Bill,
>
> Don't panic. Take your time. Weigh all the advice you get and then
> make the decision that's right for you.
>
> My husband (64) was diagnosed last November with a Gleason 6. He did a
> LOT of reading and finally decided on the robotic prostatectomy because
> he just couldn't stand the thought of the cancer being in his body.
> Obviously this may or may not be the best treatment for you personally.
>
> The operation was performed on Monday in early May. (Turned out to be
> a Gleason 3+4 when the pathology reports came back.) He came home on
> Tuesday and went back to work the next Monday, never telling anyone he
> had had cancer or the surgery. (He has a desk job.)
>
> If you are anywhere near the Orlando, FL area, check out Dr. Vip Patel
> at the Global Robotics Institute at Celebration Health. Dr. Patel has
> done over 2500 such surgeries and is one of the very best.
>
> By the time of his 6 week check up, he had total bladder control and
> impotency was not a problem either. We are very happy with the outcome
> of the robotic surgery, but I need to repeat that it may or may not be
> the best route for you to follow.
>
> Best of luck and good health.
>
>
Many thanks, Gloria.
--
Bill Anderson
I am the Mighty Favog
Mikayla M.
> By the time of his 6 week check up, he
> had total bladder control
Mine too.
> and impotency was not a problem
> either.
My husband's complete impotency saved our marriage. Fortunately his E.D.
is now a thing of the recent past.
> We are very happy with the outcome of
> the robotic surgery,
9 years ago we didn't have that option. Due to his young age and type of
Cancer we decided on a complete prostate removal for a cure instead of
treatment. As always what works well for persons A and B, may not work
at all for persons C and D. So do your research.
--
Mikayla M.
Steve Kramer
What your husband's PSA at Dx? I assume it is less that 0.1, now base on
your narrative.
"Gloria (on the road again) Konsler" <kons...@yahoo.com> wrote in message
news:hf1rdg$k59$1...@news.eternal-september.org...
: My husband (64) was diagnosed last November with a Gleason 6. He did a
LOT
: of reading and finally decided on the robotic prostatectomy because he
just
: couldn't stand the thought of the cancer being in his body.
:
: The operation was performed on Monday in early May. (Turned out to be a
: Gleason 3+4 when the pathology reports came back.) He came home on
Tuesday
: and went back to work the next Monday, never telling anyone he had had
: cancer or the surgery. (He has a desk job.)
:
: By the time of his 6 week check up, he had total bladder control and
: impotency was not a problem either. We are very happy with the outcome of
: the robotic surgery,
--
Steve Kramer
This is one issue I forgot to mention and, I think, so did others. Your lab
reported a probable Stage and Gleason Score based on what they found in some
of the needles that were poked into your prostate during the biopsy.
Staging and Gleason are two very important factors in treatment decisions.
Not just with initial treatment, but in further treatment(s) should you
suffer biological failure. They are not absolutely imparative, especially
in future decisions, but they are criteria if you know them.
Since you had three biopsies to find cancer, I'm hoping your Stage is very
low, but you really do not know what it is until someone slices and dices
your prostate on a lab table.
Also, the needle(s) that captures your cancerous cells are so small relative
to the prostate, their samples cannot be absolutely relied on for a Gleason.
Again, you don't know for sure until your prostate is on that lab table and
even then a second opinion at another lab is a good idea.
The only way to get that prostate on a lab table is to have it removed.
Again, I am not suggesting this as a deal-breaker, just a criteria to be
considered.
P.S. I note the change in your addy in another post. I fear it was done at
my suggestion. Unless the name is fictitious, I would go with something
like "Bill A." rather than your whole last name. This is a great NG, but
there are some freaks lured by the perceived nature of the subject matter.
"Gloria (on the road again) Konsler" <kons...@yahoo.com> wrote in message
news:hf1rdg$k59$1...@news.eternal-september.org...
: The operation was performed on Monday in early May. (Turned out to be a
: Gleason 3+4 when the pathology reports came back.)
--
I.P. Freely
>
> I would go with something
> like "Bill A." rather than your whole last name. This is a great NG, but
> there are some freaks lured by the perceived nature of the subject matter.
Not to mention the spambots. I'm not anonymous because I'm shy about my
PC or my identity; I'm anonymous because of specific personal stalkers
and because my last ISP phoned me personally and asked me to change my
address because my filtered spam was clogging their servers to the tune
of thousands per day after the spambots latched on to me.
I.P. Freely
Steve Kramer
news:V59Rm.72238$W77....@newsfe11.iad...
You just reminded me that I was giving other peoples' (including your)
advice and not my own. I did so because I felt guilty that he used his
whole name possibly at my request that he not use simply "Bill". But, it is
not what "I would do" or what "I do". I use my real name and address (and
once my phone number) and have done so since 1988 or 1989 without a problem.
I hereby withdraw my "I would go with something like 'Bill A'." I'm not
saying that IP's advice is not sound, only that I do not practice it and
stating that "I would" is misleading. If I had it to all over again, I
would pick Bastard Slayer and an addy of ComeN...@BastardSlayer.us. :-)
Reminds me of Berky. :-(
I.P. Freely
> I'm not
> saying that IP's advice is not sound, only that I do not practice it
My paranoia was recently supported when I began getting some major spam
at my primary mailbox ... then noticed it was being sent from my real
USENET address to the world.
I.P.
Steve Kramer
Again, not promoting against your methodology; just clarifying a mistake
that I made.
Heather
your name is not REAL either.
So a bot picked up the above and was using it to send spam? No big deal.
Hell, I am forever getting spam that has ME as the sender.....and I am
talking about my REAL private address that I only use for friends. So how
did that get out there?? There are many ways.
The next time you receive a joke from your friends, (or you send one to a
few people), if anyone leaves all of the addresses visible of who they
received it from, etc., then that is how they get it. I never leave any
addresses visible in anything that I forward. So tell those that do to cut
it out and how to highlight and delete. And to use BCC (blind copy)
Just a thought to cut out some of the spam, but once you are on a spammers
list, you will never get off.
To demonstrate that, I opened a GMail account and never ONCE used it. I
have lots of spam in that one. Just checked the other day to see.
Surprised me. My regular GMail account gets 50 to100 per day, and that is
because I used it on this ng once just to see what would happen......and
there you have it.
HF
>
I.P. Freely
> Was it really your REAL Usenet address
Yes.
> So a bot picked up the above and was using it to send spam? No big deal.
It is to me. I don't want to be blamed for it or have anyone strike
back, as I would given the chance.
I.P.
Bill Anderson
> Bill,
>
> This is one issue I forgot to mention and, I think, so did others. Your lab
> reported a probable Stage and Gleason Score based on what they found in some
> of the needles that were poked into your prostate during the biopsy.
> Staging and Gleason are two very important factors in treatment decisions.
> Not just with initial treatment, but in further treatment(s) should you
> suffer biological failure. They are not absolutely imparative, especially
> in future decisions, but they are criteria if you know them.
>
> Since you had three biopsies to find cancer, I'm hoping your Stage is very
> low, but you really do not know what it is until someone slices and dices
> your prostate on a lab table.
>
> Also, the needle(s) that captures your cancerous cells are so small relative
> to the prostate, their samples cannot be absolutely relied on for a Gleason.
> Again, you don't know for sure until your prostate is on that lab table and
> even then a second opinion at another lab is a good idea.
>
> The only way to get that prostate on a lab table is to have it removed.
>
> Again, I am not suggesting this as a deal-breaker, just a criteria to be
> considered.
>
> P.S. I note the change in your addy in another post. I fear it was done at
> my suggestion. Unless the name is fictitious, I would go with something
> like "Bill A." rather than your whole last name. This is a great NG, but
> there are some freaks lured by the perceived nature of the subject matter.
>
>
It's OK. Thanks, though.
Heather
"I.P. Freely" <fuhghed...@noway.nohow> wrote in message
> Heather wrote:
>> Was it really your REAL Usenet address
>
> Yes.
Usenet or Mail.....there's a difference.
> It is to me. I don't want to be blamed for it or have anyone strike back,
> as I would given the chance.
>
> I.P.
I get a sh*tload of mail TO me FROM me.....oh, the user name is fake, but it
is my real email address underneath. Rogers doesn't blame me because they
know that is how spammers work. In fact, they are pretty darn good at
nailing the spam and letting my kosher email thru.
I do think GMail is worse for spam, yet they are very good at stopping it.
And *striking back* just plain doesn't work cuz you are talking to a bot.
HF
I.P. Freely
> Usenet or Mail.....there's a difference.
Those are only pathways. The compromised mailbox was real, and had to be
dropped.
> And *striking back* just plain doesn't work cuz you are talking to a bot.
The real people who got in my face via that hijacked address, the real
people and corporations whom I informed were sending spam, the many
accounts I've gotten closed down, and the employees and students I've
gotten in trouble with their superiors for deliberate spamming were not
bots.
Bill Anderson
> Bill,
>
> This is one issue I forgot to mention and, I think, so did others. Your lab
> reported a probable Stage and Gleason Score based on what they found in some
> of the needles that were poked into your prostate during the biopsy.
> Staging and Gleason are two very important factors in treatment decisions.
> Not just with initial treatment, but in further treatment(s) should you
> suffer biological failure. They are not absolutely imparative, especially
> in future decisions, but they are criteria if you know them.
>
> Since you had three biopsies to find cancer, I'm hoping your Stage is very
> low, but you really do not know what it is until someone slices and dices
> your prostate on a lab table.
>
> Also, the needle(s) that captures your cancerous cells are so small relative
> to the prostate, their samples cannot be absolutely relied on for a Gleason.
> Again, you don't know for sure until your prostate is on that lab table and
> even then a second opinion at another lab is a good idea.
>
> The only way to get that prostate on a lab table is to have it removed.
>
> Again, I am not suggesting this as a deal-breaker, just a criteria to be
> considered.
>
Thanks. Last week I had a long talk with a surgeon in DC who uses the
robot. Toay I had a long talk with a surgeon at Johns Hopkins who does
the open surgery. Both have plenty of experience in their procedures.
One advantage of the robotic surgery is that it would be done in a
hospital about a mile from my condo. My mother or sister would probably
come to DC to be with me when I'm in the hospital and for a few days
afterward. I don't own a car. If the operation is done here, they can
use my condo as a base and ride Metro, but if it's done in Baltimore
they'll be in a hotel, using a rental car.
One advantage of the Johns Hopkins open surgery is that I really liked
the doctor who'd do the operation. He had that Marcus Welby M.D.
demeanor, while the DC robot guy was cocky, arrogant and certain that
his way is the best way.
The Johns Hopkins guy gave me something to think about. He required the
lab to send my original biopsy glass slides to Johns Hopkins for a
second review, and he found that at my current stage of disease,
watchful waiting is a very reasonable option. We really have caught it
early he says, with only a little cancer in two lobes. Now I don't want
to watchfully wait until the cancer has progressed to a dangerous stage,
but he said it's highly likely I could come back next year for another
biopsy and find things had hardly progressed at all. He also said I'd
make things a lot easier on myself if I'd lose about 40 pounds before
surgery.
So I think this is what I'm going to do. I'm going to go on a strict
diet/exercise regimen through the end of March and have the operation
done then. Actually I think I'll settle on the robot. I don't need to
be friends with the doc -- I just want to believe he knows what he's
doing, and the arrogant robot guy comes highly recommended. He also has
a respectable success rate, as does the open surgery Marcus Welby guy.
If the success rate is about the same and the recovery time is about the
same, then having the operation done close to home is the way I want to go.
I still have an appointment next week with a brachytherapy/seeds guy,
but I really think I may cancel it. I want the cancer out of me; I don't
want my prostate to sit there plugged with seeds and so damaged that
surgery is no longer advisable while I wonder for the rest of my (long,
I hope) life if the cancer might ever come back.
Comments? Thanks.
I.P. Freely
>
> Comments? Thanks.
Just one: If you wind up incontinent or impotent a year from now, will
you just assume that was in the cards anyway and get on with your life,
or will you kick yourself in the head for the next 30 years because you
chose the procedure with the higher rate of incontinence and impotence?
I.P.
Bill Anderson
> Bill Anderson wrote:
>>
>> Comments? Thanks.
>
> Just one: If you wind up incontinent or impotent a year from now, will
Sounds better than beating myself up.
Steve Kramer
: Thanks. Last week I had a long talk with a surgeon in DC who uses the
: robot. Toay I had a long talk with a surgeon at Johns Hopkins who does
: the open surgery. Both have plenty of experience in their procedures.
Good to hear you're covering all your bases.
: One advantage of the robotic surgery is that it would be done in a
: hospital about a mile from my condo.
Ha! You could walk to the OR!
: One advantage of the Johns Hopkins open surgery is that I really liked
: the doctor who'd do the operation. He had that Marcus Welby M.D.
: demeanor, while the DC robot guy was cocky, arrogant and certain that
: his way is the best way.
The problem with that is, sometimes they are just that good. I'd rather
have good than personable. I got lucky with both.
: The Johns Hopkins guy gave me something to think about. He required the
: lab to send my original biopsy glass slides to Johns Hopkins for a
: second review, and he found that at my current stage of disease,
: watchful waiting is a very reasonable option. We really have caught it
: early he says, with only a little cancer in two lobes. Now I don't want
: to watchfully wait until the cancer has progressed to a dangerous stage,
: but he said it's highly likely I could come back next year for another
: biopsy and find things had hardly progressed at all.
The doctor is the expert, but I would think that "really early" is just a
small amount in one lobe, but both lobes. Regardless, if it really is just
a small amount in both lobes, then you really do have a decision to make
with regard to watchful waiting.
To make the decision, you need to know exactly how much they found in each
lobe. They can make a really good guess with the percentages that were
found in each needle. You also need to graph your PSA for the last few
years. You are really lucky that you have eight years of trend to watch.
: He also said I'd
: make things a lot easier on myself if I'd lose about 40 pounds before
: surgery.
Translated, "you would make things a lot easier on me if you lost 40
pounds." And that is very true, especially for nerve sparing. Imagine your
prostate, the size of a walnut, resting on your colon and he has to stick
both hands and a scalpel (and other instraments) into a hole that he cut by
making one slice from your bellybutton to your pelvic bone. Then, while
he's down there, you want him to peel the nerves off your prostate (like
peeling an onion with the scalpel), and to incise your prostate at just the
right spot at your Kegal Muscle.
I was overweight, but I did imediately start up a cardeovascular routine so
that I could survive the major surgery. I joined a gym, started walking one
20-minute mile and by the time of the surgery, I was walking two 17-minute
miles. I think it made a huge difference.
: So I think this is what I'm going to do. I'm going to go on a strict
: diet/exercise regimen through the end of March and have the operation
: done then.
Be very careful. The last thing you want is to be anemic.
: Comments? Thanks.
Yeah, one more. Forget about it as best you can and enjoy Christmas with
your family.
--
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 undetectable since. Next Assay 02/02/10
Illegitimati non carborundum
Bill Anderson
> "Bill Anderson" <billand...@yahoo.com> wrote in message
>
> : Thanks. Last week I had a long talk with a surgeon in DC who uses the
> : robot. Toay I had a long talk with a surgeon at Johns Hopkins who does
> : the open surgery. Both have plenty of experience in their procedures.
>
> Good to hear you're covering all your bases.
>
>
And lo on December 31 the heavens opened and I beheld an angel's
prostate fall and I knew what I was to do.
On January 20 a robot is going to poke holes in my belly and go snippity
snip and remove that nasty old prostrate and then in a few days they'll
pull out the tube they've stuck up my weenie and then I'll wear diapers
for a few weeks and then I'll be good as new except for wetting my pants
when I laugh. That's the plan, anyway. My sister says "welcome to the
world of a woman who's had a baby." Here's how it works:
http://www.dcurology.net/robotic/index.html
I'm going to have the surgery done here in DC. I'm not looking forward
to any of this, but I figure it's better than the alternative.
Steve Kramer
> On January 20 a robot is going to poke holes in my belly and go snippity
> snip and remove that nasty old prostrate and then in a few days they'll
-- skramer remarks
Great!! You've decided. You've appointed. You've planned for the
aftermath. Now, aside from some arobics every day, you can sit back and
ponder life's great mysteries.
> I'm going to have the surgery done here in DC.
Hmmmmmm. My 82�-year-old uncle/Godfather drove to Cincinnati for Christmas
and, so far, took three ambulance rides to the hospital. His last procedure
is Monday, after which I will drive him back to Potomac - probably about the
21st. Maybe I'll stop by your hospital and bring you a flower arrangement
from the gift shop. Those are always good for sitting in your lap when you
leave the hospital. :-)
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 .56 years
Bill Anderson
> "Bill Anderson" <billand...@yahoo.com> wrote in message
> news:fsudnZCbAPYT4dvW...@giganews.com...
>
>> On January 20 a robot is going to poke holes in my belly and go snippity
>> snip and remove that nasty old prostrate and then in a few days they'll
>
> -- skramer remarks
>
> Great!! You've decided. You've appointed. You've planned for the
> aftermath. Now, aside from some arobics every day, you can sit back and
> ponder life's great mysteries.
A friend who had the same operation about two years ago mentioned,
without any prompting from me, how his outlook changed for the better
once he had finally *decided.* Same here. Once I knew where I was
going with this, it was almost as though I felt happy. Well I don't
feel happy about any of it, but my attitude has definitely improved.
Jeannie
thing. You forgot about the Kegel exercises. Do them religiously starting
a few weeks prior to surgery and then when your catheter gets removed,
resume the Kegels. And then you won't have to worry about diapers or
wetting your pants when you sneeze. :o) That regimen certainly worked for
my husband. He only wore pads for the first two days after catheter
removal -- and only because the doc said he should -- but they were never
needed. And he has never leaked at all. Kegels work!!
Jeannie
blank
as many of us know first hand, he was the exception and not the rule. Not
meaning to be the voice of darkness Bill, but you are probably closer to the
actual truth regarding incontinence. Some of us are lucky enough to
experience little or no incontinence but many more of us follow the path
you've described. However Jeannie is dead-on with the advice to do Kegels.
Work them muscles for success !!!! I'm 8 weeks post-op and sleeping without
pads (no nocturnal leaks) and only use one or two light duty pads during the
daytime and I am living a full day every day. Even then I usually only
change them out for hygenic reasons more so than they being soaked. Good
Luck to you.
"Jeannie" <jean...@comcast.net> wrote in message
news:hiaj73$mj$1...@news.eternal-september.org...
Steve Jordan
(snip)
> However Jeannie is dead-on with the advice to do Kegels.
> Work them muscles for success !!!!
(snip)
A note of caution: do not overwork the muscles. That can,
as with any other muscle, cause injury.
Regards,
Steve J
Steve Kramer
news:4b48ebcc$0$5317$9a56...@news.aliant.net...
> Work them muscles for success !!!! I'm 8 weeks post-op and sleeping
> without pads (no nocturnal leaks) and only use one or two light duty pads
> during the daytime and I am living a full day every day. Even then I
> usually only change them out for hygenic reasons more so than they being
> soaked. Good Luck to you.
Hi, Jerry. I don't know your age, so you may be retired. If not, are you
back to work after eight weeks?
--
skramer remarks
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
Bill Anderson
In my most recent visit with the doc, the one in which we settled on a
date and time, he gave me lots of insight into what was coming but he
never once mentioned the word "Kegel." I know what it means because
I've been reading. But even though I asked whether I should be
preparing pre-surgery by exercising, he didn't seem to care.
What he did say was that he was going to make me give a "recital" in
which I'd show him that I could contract muscles that would result in my
penis "moving." He said that some men give him a blank stare when he
talks about this and that's when he knows he's in trouble. He said that
he has to send men who don't know what he's talking about to a physical
therapist to figure it out.
But I know exactly what he's talking about -- at least I THINK I do --
and I'm not really worried about it. We sat across his desk from each
other practicing. I said, "I'm doing it now," and he said, "I don't
want to see your body move, don't want to see anything in your face, I'm
doing it now, you can't seem any reaction in me, can you?" Well, maybe
I let my face show I was busy because I wanted him to see I was actually
doing something. I can do it without any facial reaction quite easily.
I can tighten and relax my urinary sphincter with no problem. I can
stop flow at will. At least I can NOW. Not sure about a couple of
weeks from now, but we'll see.
Now don't go worrying about what my doc is or isn't telling me. The
need to know how to contract to stop flow and so forth was a big part of
the speech he made to me. He just never used the word "Kegel." He did
mention "floor exercises" though and said he'd show me what he wanted
when he removed the catheter.
Basically I got the idea that frequent exercise prior to surgery wasn't
necessary. You either know what to do or you don't, and doing it is up
to you. Practice ahead of time isn't going to make the sphincter on
your bladder get ripped like Arnold Schwarzenneger prior to surgery.
That was my impression, anyway.
He did mention that people who come to him "alone," meaning without a
wife, tend to take longer to regain continence because they don't have
anybody to nag: "Did you tighten before you stood up? Did you get ready
before you did this or that?" That sort of thing. I'm afraid I came to
him alone. But I'm determined to prove him wrong.
So tell me, are you 100% certain pre-op Kegels made a difference? I'm
going to sit here squeezing until I hear back from you.
chazjac
I recall exactly the same feeling after making the decision for surgery --
still a scary time, but committing to one treatment and taking the steps to
make it work gives us some control over how things go.
The doc was talking about pelvic floor exercises or 'Kegels;' they're the
same thing, as far as I know. They are no guarantee, but doing them ahead
of time can shorten the time you have incontinence SEs after the surgery.
My surgeon didn't say too much about them either -- he just wanted me to
lose some weight before the LRP.
Some of the men of this NG have said they were continent from the time the
tube was taken out, but I think they were the happy exception to the rule.
You'll probably leak a lot at first, and gain control after a few
days/weeks.
Good luck! I look forward to hearing about how it all works out.
--charlie
Vince
My surgeon stressed Kegel exercises before my RRP. He even had me go to a
bio feedback session with a tech and some fancy equipment to make sure I
was doing the Kegels right. Consequently when my catheter was taken out
after 21 days, I was completely dry. And other than occasional stress
incontinence, I've stayed that way. At least up until I went through
salvage radiation last year. That seemed to increase my stress leakage,
so I've started the Kegels again. I'm a firm believer in them. I have a
friend who recently went through a RLRP and his surgeon never mentioned
Kegels. He has severe leakage problems now about 3-4 months post op. So
to me the few minutes a day it takes to practice the Kegels is a no
brainer.
Just my 2 cents worth.
Vince
--
PSA 4.73 07/2000 @ 48
Biopsy 07/2000 G7 (3+4)
RRP 09/2000 @ 49 G7 (3+4), T2b Neg margins
PSA < 0.1 for 14 months post op
PSA .8 .8 .6 .8 04/2008 thru 12/2008
IMRT 02/2009 - 04/2009, 38 treatments, 60.8 Gy total
PSA .02 05/18/09
PSA .01 09/22/09
Steve Kramer
> In my most recent visit with the doc, the one in which we settled on a
> date and time, he gave me lots of insight into what was coming but he
> never once mentioned the word "Kegel."
-- skramer remarks
That was my experience as well. But, I have read where some docs prefer you
start before surgery. There is also a disconnect in how they are done. My
doc says to do them while sitting, driving, etc. and definitely not while
urinating. Other docs say to do them by holding back urine. Considering
how man keglers end up leaking, I wonder if anyone really knows.
> But even though I asked whether I should be preparing pre-surgery by
> exercising, he didn't seem to care.
> Basically I got the idea that frequent exercise prior to surgery wasn't
> necessary. You either know what to do or you don't, and doing it is up to
> you. Practice ahead of time isn't going to make the sphincter on your
> bladder get ripped like Arnold Schwarzenneger prior to surgery. That was
> my impression, anyway.
There is no doubt that aerobic exercise before and immediately after major
surgery will help you heal, help ward off depression, help fight infection,
etc., etc. I was physically out of shape and obese when I was diagnosed,
yet I was back to work without restrictions within eight weeks - in a
potentionally vigorously physical job - and two to four weeks sooner than my
doctor thought. I attribute it all to my six weeks of daily walking prior
to and continued walking immediately after the catheter was removed.
> What he did say was that he was going to make me give a "recital" in which
> I'd show him that I could contract muscles that would result in my penis
> "moving."
Wow! I never heard that before. Most men have no idea how to exercise a
Kegel even after you tell them. That's a great way to show them.
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
I.P. Freely
> blank wrote:
>> Jeannie your husband [immediately dry]... was the exception and not the rule.
The incontinence experts I consulted would say he's an off-the-charts
extreme exception.
>> I'm 8 weeks post-op and sleeping without pads (no nocturnal leaks)
That's risky. I was completely dry while sitting and lying down from the
very day I removed my catheter, with two exceptions *many* months apart.
Those two exceptions involved waking up with a bladerful of urine in my
bed.
> I can tighten and relax my urinary sphincter with no problem. I can
> stop flow at will. At least I can NOW. Not sure about a couple of
> weeks from now, but we'll see.
I could also send Morse code with my stream from the day I removed my
catheter, and still can. Apparently a working sphincter is necessary but
not sufficient to insure continence. If the sphincter doesn't get the
memo when the leak starts, it's not going to contract.
> Practice ahead of time isn't going to make the sphincter on
> your bladder get ripped like Arnold Schwarzenneger prior to surgery.
> That was my impression, anyway.
My uro disagrees, saying that any muscle gets stronger with exercise.
> are you 100% certain pre-op Kegels made a difference?
It doesn't matter whether one person attributes his success to Kegels.
What matters is the research, which reportedly shows they do help, at
least post-op. Try Google for specific studies.
I.P.
I.P. Freely
> I was completely dry. And other than occasional stress
> incontinence, I've stayed that way.
"Besides having no period for 7 months now, Mom, I'm not very pregnant.
Ummm ... Are you gonna finish that deep-fried pickle?"
"Besides that little incident, officer, why did you pull me over? Nobody
important died."
"I do solemnly swear that I will faithfully execute the office of
President of the United States, and will to the best of my ability ...
ahh, what IS it now, Hon? Oh, this isn't piss all over my shoes. It's
just stress water."
"I'm dry lying down ... unless you count the two times I've flooded my
mattress."
"I stay dry for hours in the gym ... as long as I don't as much as look
at a trampoline. One bounce and the intercom screeches "CLEANUP IN THE
CARDIO ROOM; ALL PATRONS PROCEED TO THE NEAREST EXIT". That's not
incontinence; it's trampolinaphobia."
"Pads? I don't need no steeknin' pads with my khakis, and, no, I didn't
fall in the lake. That's just stress."
"WHO LET THE DOGS OUT?!!!"
Are you getting my drift? ;-)
I.P.
I.P. Freely
> Most men have no idea how to exercise a
> Kegel even after you tell them.
We've been doing them since we were in diapers. Class? Kegels. Date?
Kegels. Church? Kegels. Ball game? MAJOR Kegels.
We just didn't know who the heck Dr. Kegel was.
I.P.
chazjac
"I.P. Freely" <fuhghed...@noway.nohow> wrote in message
[snip]
> That's risky. I was completely dry while sitting and lying down from the
> very day I removed my catheter, with two exceptions *many* months apart.
> Those two exceptions involved waking up with a bladerful of urine in my
> bed.
I had that happen too. Now I always have a mattress pad under me while
sleeping, in addition to the pad I wear.
>> Practice ahead of time isn't going to make the sphincter on your bladder
>> get ripped like Arnold Schwarzenneger prior to surgery. That was my
>> impression, anyway.
>
> My uro disagrees, saying that any muscle gets stronger with exercise ...
...and is quicker to heal -- which might be the reason that some folks
recommend Kegels before the surgery.
--charlie
Geo
I used the Kagel exercise and firmly believe it helped me have no
leakage issues from the day the catheter was removed. I had my RP 3
years ago and thank God have never had any leakage issues.
I started the exercises 1 month before the RP operation at my Uro's
recommendation. I did 45 Kagels a day in 3 groups of 15 each day. I held
the kagel for 10 seconds with a 5 second break for 15 cycles. Later in
the day I would do two more groups.
I did this before the RP operation. Don't do the kagels after surgery
with the catheter in. I have not needed to do any more exercises after
the RP. I have no issues with lifting or sneezing.
Good Luck
Geo
blank
I am not retired yet, and also not back at work yet, however I am going for
an assessment this week at it is my intention to be back on staff by weeks
end. I wonder why you asked that?
Jerry
"Steve Kramer" <skr...@cinci.rr.com> wrote in message
news:hib36e$kja$1...@news.eternal-september.org...
Steve Kramer
news:8Bo2n.3800$%P5....@newsfe21.iad...
>>> Jeannie your husband [immediately dry]... was the exception and not the
>>> rule.
>
> The incontinence experts I consulted would say he's an off-the-charts
> extreme exception.
-- skramer remarks
I am NOT an expert. However, I feel compelled to point out that, assuming
you followed the advice of the incontinence experts, they failed YOU
miserably. U P Freely, as i recall.
> I could also send Morse code with my stream from the day I removed my
> catheter, and still can.
. . . - - - . . .
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
Steve Kramer
> Hey there Steve.
> I am not retired yet, and also not back at work yet, however I am going
> for an assessment this week at it is my intention to be back on staff by
> weeks end. I wonder why you asked that?
There have been recent inquiries herein regarding people going back to work
after RRP, LRP, and RLRP. Furthermore, I'm 'mentoring' (is that the right
word?) a man who has been off work more than eight weeks and I'm wondering
if he needs prodding. So, I have a renewed interest in length of time back
to work.
I was back to work just shy of 6 weeks with RRP. I was back without
restrictions two weeks later. I thought that was standard. I know a
councilman who was back in his seat 7 days after RLRP (though he admits it
was a mistake).
I'm prattling. Suffice it to say, inquiring people want to know. :-)
I.P. Freely
> assuming
> you followed the advice of the incontinence experts, they failed YOU
> miserably.
They gave me no advice. I passed their hydraulic tests with flying
colors and dry pants. They have no clue why I'm not dry, especially
since I stay dry for hours of heavy gym work. I still suspect there's a
sensor nerve they don't yet know about, because I can fill my pad
without ever perceiving the leaks occur. No signal, no contracture.
I.P.
I.P. Freely
> I'm 'mentoring' (is that the right
> word?) a man who has been off work more than eight weeks and I'm wondering
> if he needs prodding.
My thoughts exactly. I was physically able to return to work 2-3 weeks
after my open RRP ... with half a colon thrown in for good measure. My
primary obstacles were a) that wet cat in my pants and b) I was retired.
I.P.
blank
complication of a heamodynamic challenge. Upon hospital release, doc told me
to go home and take it easy but exercise at least once per day. He hammered
home no lifting heavier than 5 lbs for at least 6 weeks, but as strongly
suggested walking. In the meantime I had been constantly walking during my
hospital stay (5 days), and actually got in a bit of stair work while there,
so I figured "hey great". My darling wife and I started walking the same day
I got home. Mind you, it was only tottering about the back yard, but I've
not looked back since. I walked prgressively further and longer every day,
and in the past two weeks as I have been feeling really strong again, I've
re-introduced some light to moderate lifting, snow shovelling (remember I'm
from Canada), and have tackled some of my favourite rough country hiking
trails. I met my greatest post-op challenge last week when I walked a
trail/roadway combination hike of 12 miles in about 3.5 hours. I
deliberately worked that program to coincide with my next doc visit in hopes
that he'll sign off on my return to work papers and let me go back on full
employment. I wouldn't recommend my course of action to anyone I didn't
know, I was comfortable in my ability and fitness level to do what I did,
but I'd say if your friend isn't being as active as he could be, he is
retarding his recovery. Might need a bit of encouragement?
Jerry
"Steve Kramer" <skr...@cinci.rr.com> wrote in message
news:hif6es$qio$1...@news.eternal-september.org...
Steve Kramer
> I met my greatest post-op challenge last week when I walked a
> trail/roadway combination hike of 12 miles in about 3.5 hours.
Clearly, you're a great example for him. I'm 9+ years post RRP and haven't
walked more than 8 miles in a single day.
I.P. Freely
What's your job ... pro football player? My boss ordered me back to work
the second day after my open hernia repair ... the SOB. ;-)
I.P.
Jeannie
"I.P. Freely" <fuhghed...@noway.nohow> wrote in message
news:8Bo2n.3800$%P5....@newsfe21.iad...
>> blank wrote:
>
>>> Jeannie your husband [immediately dry]... was the exception and not the
>>> rule.
That's very possible. And it's probably because of the Kegel lessons he had
a few weeks prior to surgery. Hubby's surgeon sent him to a technician who
'taught' him the correct way to do them by inserting a small tube into his
rectum. The tube was connected to wires that were connected to some kind of
measuring machine. (I have no clue what the thing was called.) As he was
contracting the sphincter muscle the machine would show if he was doing it
right or of he was contracting the wrong muscles, which he did quite often.
It took about 30 mins. before he could pinpoint the exact muscles and get it
right every time. And as I said, he started this two weeks before his
surgery ... in the morning before getting out of bed and at bedtime.
Another thing that I think helped with the zero incontinence was his walking
regimen. He started walking up and down the driveway the day after he got
home from surgery. He'd strap his small bag on his leg, pull on his
sweatpants so no one could see it, and walk slowly up and down the driveway
several times per day. And after the catheter came out, there was no
stopping him. He started doing the Kegel's again and was walking three
miles per day.
AND, he had an awesome surgeon. :o)
Jeannie
blank
very deliberately. I am happy to report my final assessment was positive and
I am returning to work, full time and full duty, this weekend. My boss wants
his people back in as good a condition as he can get them and is satisfied
to wait although he would have taken me back on limited functions. T'war the
sawbones that said Naye. You need a new boss.
"I.P. Freely" <fuhghed...@noway.nohow> wrote in message
news:qvK2n.18200$Sh7....@newsfe25.iad...
blank
and improvement post-op. I always walked/jogged but never as fanatically as
I have since being op'ed on. Good for your man, and you too no doubt. ;o)news:hig2nn$3de$1...@news.eternal-september.org...
I.P. Freely
> You need a new boss.
Took care of that problem ... er, those problems ... long ago.
One got fired, the other was fired and stripped of his pension.
Even colonels need to realize they answer to generals.
I.P.
Bill Anderson
It's 6:00 a.m. The taxi is on its way to take me to the hospital where
the big robot will do the things it does and then I'll be good as new,
minus one prostate. Or so they say. Wish me luck.
Vince
> Bill Anderson wrote:
>
> It's 6:00 a.m. The taxi is on its way to take me to the hospital where
> the big robot will do the things it does and then I'll be good as new,
> minus one prostate. Or so they say. Wish me luck.
Good luck Bill! Hope all goes well.
Keep us posted on your results and recovery when you have time. Remember
you'll have plenty of help from the folks here if/when you need it.
Steve Kramer
> Bill Anderson wrote:
>
> It's 6:00 a.m. The taxi is on its way to take me to the hospital where
> the big robot will do the things it does and then I'll be good as new,
> minus one prostate. Or so they say. Wish me luck.
Sorry I wasn't here for you at 6, Bill. I had to be at the hospital with my
wife at 5.
chazjac
Bill Anderson
Well I completely understand, Steve. We all have our priorities. :-)
Hope things went well for Mrs. Kramer.
I'm at home now. Just came in the door about 30 minutes ago. Feeling
pretty good. Belly is swollen a bit and there is some bladder pain.
They fed me a big breakfast and insisted I stay and eat lunch at the
hospital. I'd been ready to go home all morning, but I had to wait for
the delicious hospital meal to arrive at 1:30 before they'd let me go.
I gobbled about half of it down. My stomach is playing a symphony right
now and it hurts a bit. They've given me a prescription for
Tylenol/codeine and I'll take some in a little while if things don't get
better.
My blood pressure dropped last night when they first had me sitting in a
chair, but after I got some fluids everything got better and this
morning I was 121 over 81.
I'm able to stand up straight and walk respectable distances as long as
I take it easy. Getting up and down from chairs and bed may not be as
bad as I think it is -- I really put on a show getting out of bed this
morning, but once I'd done it I have to admit it didn't hurt as bad as I
thought it would.
The doc says my prostate was "really large" but not due to disease -- I
just had a large prostate. They're doing tests on it and within a week
I'll know more about the extent of the cancer. Actually it was the
assistant doc I talked with this morning. He stood by the robot and
kept it aligned and such while the real doc sat at the robot console
across the room.
My main concern until I talked with him was that they'd decided I needed
to keep the catheter in a bit longer than originally planned. I
immediately began assuming the worst. But not to worry -- the
explanation is that because my prostate was asymmetrically large,
cutting it out left the bladder tissue thinner than optimal and they
want to give it a few extra days to heal. The doc said this is not
unusual and not to worry about it.
He also said they didn't see any sign of cancer in the prostate. Say
WHAT?! No, no, don't worry, they know there's cancer because of the
biopsy and they'll know more about the extent of it in my prostate in
about a week. But it didn't look like it has spread, and they spared the
nerves.
I think that when I die the cause won't be prostate cancer and that's
really all I wanted out of this.
Thanks to all of you for the many kind words and comments of support. I
won't go away. I'll keep checking back in. I hope my experiences will
prove to be helpful to others.
Steve Kramer
[GOOD NEWS REDACTED]
> Thanks to all of you for the many kind words and comments of support. I
> won't go away. I'll keep checking back in. I hope my experiences will
> prove to be helpful to others.
-- skramer remarks
Yup! It's all good news. Wonderful news.
chazjac
your nerves were spared.
So now we'll hope for the good news to pile on: good pathology report,
undetectable PSAs forever, erections, continence, and many happy cancer-free
years.
--charlie
I.P. Freely
>
> They're doing tests on it and within a week
> I'll know more about the extent of the cancer.
For others still considering both open and laparoscopic RP, remember
that in the open procedure, those lab tests are performed real time --
While-U-Wait -- so the surgeon can keep cutting if your margins are
positive.
> I think that when I die the cause won't be prostate cancer
I hope your doctor didn't actually say that, as it's mighty presumptive.
That's great that you feel so good so quickly. That's a big plus
compared to having your abs unzipped, and your recovery ward personnel
are to be commended for getting you walking so soon. It wasn't until my
3rd or 4th day post-op that I could find a nurse with the time to spare
to get me out of bed.
I.P.