Update from skeptic...not good

Well after dosing myself with enough sedatives to muster up the nerve
to go through with the biopsy (after the third different uro strongly
suggested it), I met for a consultation and as I expected (from my
high psa of 14 which has doubled in 7-8 months), my gleason is 7 (4+3)
on one side and 8 (4+4) on the other, with a total of 6 cores
cancerous.
So, there's no re-thinking it now....my pie-in-the-sky watchful
waiting has been bashed to the ground and it's time to join the club,
albeit right through the front door.
After the obligatory chest xray, bone scan and cat scan (i think) to
see if anything has spread beyond the prostate, I will then make my
dreaded choice for surgery (my uro thinks seeds will not do it)....in
fact, he is already predicting/proposing RP with follow up external
radiation.
In other words, it seems I'm being given the most common dx and the
most common rx...would you agree?
While I full well know the outcome is all the same, I am still much
more interested in laparascopic vs. open, especially due to the less
loss of blood and almost immediate (surgical) recovery.
I figure why not...it'll give me a head start, so to speak.
I am willing to fly or drive anywhere if I can find an excellent
experienced DaVinci or similar surgeon with 1,000 of these performed.
It's taking all my will power just to type this, yet it's a strange
form of therapy......meeting the devil face to face.
One of my questions (feel free to comment on any of the above) is will
the laparascopic be not recommended if the Prca has spread, say to the
bladder? Do you have to have a "clean" well defined nodule to have
lap RP or can they pretty much do anything?
Thanks for listening.

On Wed, 14 Nov 2007 03:27:29 -0800, skeptic <ribrass@aol.com> wrote:

>Well after dosing myself with enough sedatives to muster up the nerve
>to go through with the biopsy (after the third different uro strongly
>suggested it), I met for a consultation and as I expected (from my
>high psa of 14 which has doubled in 7-8 months), my gleason is 7 (4+3)
>on one side and 8 (4+4) on the other, with a total of 6 cores
>cancerous.
>So, there's no re-thinking it now....my pie-in-the-sky watchful
>waiting has been bashed to the ground and it's time to join the club,
>albeit right through the front door.
>After the obligatory chest xray, bone scan and cat scan (i think) to
>see if anything has spread beyond the prostate, I will then make my
>dreaded choice for surgery (my uro thinks seeds will not do it)....in
>fact, he is already predicting/proposing RP with follow up external
>radiation.
>In other words, it seems I'm being given the most common dx and the
>most common rx...would you agree?
>While I full well know the outcome is all the same, I am still much
>more interested in laparascopic vs. open, especially due to the less
>loss of blood and almost immediate (surgical) recovery.
>I figure why not...it'll give me a head start, so to speak.
>I am willing to fly or drive anywhere if I can find an excellent
>experienced DaVinci or similar surgeon with 1,000 of these performed.
>It's taking all my will power just to type this, yet it's a strange
>form of therapy......meeting the devil face to face.
>One of my questions (feel free to comment on any of the above) is will
>the laparascopic be not recommended if the Prca has spread, say to the
>bladder? Do you have to have a "clean" well defined nodule to have
>lap RP or can they pretty much do anything?
>Thanks for listening.


Sorry to hear your news skeptic, it's obviously worse than you had
feared. But hopefully treatable.
I don't have the depth to give you the more comprehensive answers
you'll get from others but on that last point, my uro had cut his
teeth on open surgery before starting laparascopic (I had an LRP) and
told me just before the op that there was an outside chance that he
would go to open surgery if it were deemed necessary. I didn't
interrogate him on the circumstances but I was comforted by the fact
he could do both. Might suspected spread have been a factor, or just
simply dropping a pair of pliers into my bladder and out of reach of
his retrieval tool? I don't know. But its obviously an important Q
for you. I wonder also if those doing the plain LRP having
apprenticed on open RP might be better equipped than those of the Da
Vinci mob who maybe had less practice at doing it freehand? Just a
thought. I wish you the best for what lies ahead.

On Wed, 14 Nov 2007 03:27:29 -0800, skeptic <ribrass@aol.com> wrote:

>Well after dosing myself with enough sedatives to muster up the nerve
>to go through with the biopsy (after the third different uro strongly
>suggested it), I met for a consultation and as I expected (from my
>high psa of 14 which has doubled in 7-8 months), my gleason is 7 (4+3)
>on one side and 8 (4+4) on the other, with a total of 6 cores
>cancerous.
>So, there's no re-thinking it now....my pie-in-the-sky watchful
>waiting has been bashed to the ground and it's time to join the club,
>albeit right through the front door.
>After the obligatory chest xray, bone scan and cat scan (i think) to
>see if anything has spread beyond the prostate, I will then make my
>dreaded choice for surgery (my uro thinks seeds will not do it)....in
>fact, he is already predicting/proposing RP with follow up external
>radiation.
>In other words, it seems I'm being given the most common dx and the
>most common rx...would you agree?
>While I full well know the outcome is all the same, I am still much
>more interested in laparascopic vs. open, especially due to the less
>loss of blood and almost immediate (surgical) recovery.
>I figure why not...it'll give me a head start, so to speak.
>I am willing to fly or drive anywhere if I can find an excellent
>experienced DaVinci or similar surgeon with 1,000 of these performed.
>It's taking all my will power just to type this, yet it's a strange
>form of therapy......meeting the devil face to face.
>One of my questions (feel free to comment on any of the above) is will
>the laparascopic be not recommended if the Prca has spread, say to the
>bladder? Do you have to have a "clean" well defined nodule to have
>lap RP or can they pretty much do anything?
>Thanks for listening.

If you are indeed leaning towards the RLRP surgery, the two top names
here in NYC are Tewari (NYPH Cornell) and Samadi (MSKCC). I myself was
treated by Tewari and keeping in mind that everyone's case is unique,
I am extremely happy with the results. Google either one of these Drs.
for info on them.

Regarding your concerns about encapsulation, they'll have an idea
based on the biopsy results compared to satistical models, however,
even if all of your tests come back negative they'll still take
surrounding tissue samples that they will test right there.

My gut is that if the horse is out of the barn past a certain extent,
that RLRP would not be the best option for you. There are others here
far more versed than me who'll expand on this though I'm sure.

I will suggest this though, if it comes down to surgery and you do not
take well to anesthesia (headaches, nausea, vomitting) I strongly
recommend that you speak with the anesthesia team about an antiemedic
to combat these symptoms. Good luck.

--
PSA @ 45 yrs. = 4.7 02/06/2007
Biopsy 03/16/2007 G7(3+4),T1c
RLRP 06/12/2007 G7(3+4),T2cN0M0 Neg margins
PSA 7/16/2007 = <0.1
PSA 9/12/2007 = <0.1

"skeptic" <ribrass@aol.com> wrote in message
news:1195039649.626073.74770@d55g2000hsg.googlegro ups.com...

> I met for a consultation and as I expected (from my
> high psa of 14 which has doubled in 7-8 months), my gleason is 7 (4+3)
> on one side and 8 (4+4) on the other, with a total of 6 cores
> cancerous.
> So, there's no re-thinking it now....my pie-in-the-sky watchful
> waiting has been bashed to the ground and it's time to join the club,
> albeit right through the front door.

You are most welcome, Skeptic, to through away that pass and accept your
membership card; though, as always, we are remorseful in accepting another
member.


> After the obligatory chest xray, bone scan and cat scan (i think) to
> see if anything has spread beyond the prostate, I will then make my
> dreaded choice for surgery (my uro thinks seeds will not do it)....in
> fact, he is already predicting/proposing RP with follow up external
> radiation.

Yeah, with a PSA 14 and cancer in both lobes and a Gleason 8 is part of it,
that would be the aggressive treatment. Aggressive treatment has recently
shown to extend Gleason 7 patients from 9.3 years to 15+, on average. I
don't recall the study to cite or the results for Gleason 8, but I'm sure
they are comparable.


> While I full well know the outcome is all the same, I am still much
> more interested in laparascopic vs. open, especially due to the less
> loss of blood and almost immediate (surgical) recovery.

I don't know about the blood thing, but I think I would rather RLRP, too,
just for the bigger picture. With a PSA 14 and Gleason 8, there is a
hightened chance of capsule penetration or margin involvement. I think you
can be a whole lot more exacting when you're looking at a basketball on a
plazma monitor rather than a walnut inside a one foot hole.


> One of my questions (feel free to comment on any of the above) is will
> the laparascopic be not recommended if the Prca has spread, say to the
> bladder?

Generally, surgeons will not operate if the cancer is known to have spread
outside the prostate. It is widely considered to be too much of an assault
on one's body just to take out the source of an already escaped cancer. Few
(extremely few) consider debalking the cancer to be optimum and will still
operated. My surgeon and I agreed that if he found it in my lymph nodes
first, the surgery would end. I was about as ignorant as they come back
then, but would still make the same decision today.


> Do you have to have a "clean" well defined nodule to have
> lap RP or can they pretty much do anything?

The 'standard' would be that you merely need to have no evidence of cancer
outside the prostate. Once that occurs, you're clearly into a no-cure
circumstance. However, there is still plenty of life to live. While I had
surgery in 2000, it was established fairly well by 2003 that it had escaped
before my surgery. I'm still alive and intend on stay that way for another
number of years; at least until October 10, 2012.


--
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

I was under the impression that the bone scans, chest xray and catscan
were for the purpose of determining if it spread...how else does one
know?

"skeptic" <ribrass@aol.com> wrote in message
news:1195047347.539628.15420@d55g2000hsg.googlegro ups.com...

>I was under the impression that the bone scans, chest xray and catscan
> were for the purpose of determining if it spread...how else does one
> know?

The bone scan, chest x-ray, and CATscan are to find any obvious sign that
the cancer has spread, e.g., tumors in the lung, pelvis, vertebrae, etc. If
you do, then the prostate becomes just one of multiple cancerous tumors
requiring a holistic approach to treatment.

Usually, especially with your numbers, nothing is found on any of these
tests. Don't sweat them. I would focus on getting ready for treatment in a
few weeks. By then, in my personal, non-medical, non-therapist opinion,
you'll want to be walking two 17-minute miles and drinking two liters of
water a day. Ask your doctor about taking iron.




--
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

Hi,
Not the best news to recieve...........Yeah, I know..........most of us in
this group have had similiar news stories to contend with. Well with that
over, now decision time.
I would definately get opinions from "Top Prostate Cancer Specialists"
Either Surgery, Oncology, or........
Once you have radiation, you do not get a chance at Surgery.
When you get surgery, and the lab results are in......you can get a much
better idea of the containment factor.
Radiation then is a possibility........
All these decisions are yours and the Dr.s you see.

Like in prior posts, when the surgery is performed and spread is found, the
patient is put back together.........
I remember that when I woke up from surgery and did not feel a
catheter........"Oh, no!"
Later when the anesthesia wore off, it was there.......

Here is a Dr. that is a top Urology Professor, and yes, my surgeon in 1999
I had RP and this Dr. still does that.
http://urology.stanford.edu/faculty/brooks.html
He may give you Dr.s he knows or has taught and if you are willing to fly
or...........
He may take you as a patient.

I do wish you the best in your decision making, and hopefully things will
come out for you just fine.
John Loomis



"skeptic" <ribrass@aol.com> wrote in message
news:1195039649.626073.74770@d55g2000hsg.googlegro ups.com...
> Well after dosing myself with enough sedatives to muster up the nerve
> to go through with the biopsy (after the third different uro strongly
> suggested it), I met for a consultation and as I expected (from my
> high psa of 14 which has doubled in 7-8 months), my gleason is 7 (4+3)
> on one side and 8 (4+4) on the other, with a total of 6 cores
> cancerous.
> So, there's no re-thinking it now....my pie-in-the-sky watchful
> waiting has been bashed to the ground and it's time to join the club,
> albeit right through the front door.
> After the obligatory chest xray, bone scan and cat scan (i think) to
> see if anything has spread beyond the prostate, I will then make my
> dreaded choice for surgery (my uro thinks seeds will not do it)....in
> fact, he is already predicting/proposing RP with follow up external
> radiation.
> In other words, it seems I'm being given the most common dx and the
> most common rx...would you agree?
> While I full well know the outcome is all the same, I am still much
> more interested in laparascopic vs. open, especially due to the less
> loss of blood and almost immediate (surgical) recovery.
> I figure why not...it'll give me a head start, so to speak.
> I am willing to fly or drive anywhere if I can find an excellent
> experienced DaVinci or similar surgeon with 1,000 of these performed.
> It's taking all my will power just to type this, yet it's a strange
> form of therapy......meeting the devil face to face.
> One of my questions (feel free to comment on any of the above) is will
> the laparascopic be not recommended if the Prca has spread, say to the
> bladder? Do you have to have a "clean" well defined nodule to have
> lap RP or can they pretty much do anything?
> Thanks for listening.
>

"skeptic" <ribrass@aol.com> wrote in message
news:1195039649.626073.74770@d55g2000hsg.googlegro ups.com...
....
> While I full well know the outcome is all the same, I am still much
> more interested in laparascopic vs. open, especially due to the less
> loss of blood and almost immediate (surgical) recovery.
....
I understand that recovery is quicker from laparascopic surgery,
but "almost immediate" doesn't sound right to me. Either way it's
done, there's going to be some serious work done on you.

> I am willing to fly or drive anywhere if I can find an excellent
> experienced DaVinci or similar surgeon with 1,000 of these performed.

If you can find a really experienced, excellent surgeon using
either technique, I'd go for it. Radiation is also a possibility and
you might want to talk to a radiation oncologist too.

> It's taking all my will power just to type this, yet it's a strange
> form of therapy......meeting the devil face to face.

I think the time for qualms and queasiness is past. You need
to take the bull by the horns and get moving on finding a doctor
and a treatment and getting it done. That doesn't mean that you
should grab the first doctor who offers to treat you, but it does
mean that when you find one who looks right, don't delay. Your
high Gleason and rapid doubling time are indicators that quick
action is required.

> One of my questions (feel free to comment on any of the above) is will
> the laparascopic be not recommended if the Prca has spread, say to the
> bladder? Do you have to have a "clean" well defined nodule to have
> lap RP or can they pretty much do anything?

I don't know the answer to that. A surgeon would be your best
source, but I'm not even sure that all surgeons agree or operate
in the same way.

Since you're willing and able to travel, you might want to call one
of the surgeons recommended by others, see if they are able
to do a consultation soon and schedule a surgery soon after.

If I were you I would also consult the best radiation oncologist
you can find. There's different theories about this. Some think
that radiation is no good, and some think it's no good for high
Gleason cancers. Some think it's better for cancers that may
have spread a bit because of the ability to treat areas around
the prostate. Some, like your own doctor, recommend both
surgery and radiation - which might be your best chance. But
I don't know and don't know if anyone really does.

But whatever you do, make it your top priority. Don't worry
about pain or recovery time. They're both manageable. The
surgery itself will be totally pain free. You'll go to sleep and
wake up in what seems like one second later and it will all be
over. Most people who have had either type of surgery find
that the post-operative problems are manageable and they
get better day by day.

Good luck.

Alan

Hi Skeptic

I started off with Gleason 9 and PSA 14 2005. Was offered a new
process to attack prostate - HIFU, in 2006 , and a second go to attack
stuff in seminal vesicle 2007.

Marc Laniado in UK who's site I have always thought is very
informative explains HIFU as follows:

>http://www.drmarc.co.uk/Prostate%20cancer/HIFU.htm
>High Intensity Focused Ultrasound (HIFU)is the name for a
technique to treat prostate cancer. Like a magnifying glass
focuses
light rays to a focal point, HIFU concentrates sound waves on
a precisely targeted, tiny area of diseased tissue. HIFU heats the
tissue to about 100°C degrees and destroys it.
The advantage of visually Directed HIFU over conventional HIFU
is that the surgeon uses real-time feedback to adjust the amount of
energy needed to ensure eradication of the diseased tissue whilst
protecting healthy tissues. The active involvement of the surgeon in
the planning and treatment achieves a higher rate of success.
HIFU is a relatively new treatment that has become popular as
it is minimally invasive with few side effects.< END excerpt


I went for it because of that last sentence - and knowing it would be
with top surgeon. . Purely personally -not a lot of experience out
there- I can vouch it is correct. I have posted a summary of my
experience recently. (Limited side effects have disappeared from
prostate op, and seem to be zero side-effects from a further sem ves
op three months ago.)
So it would be sensible to at least take a look at what's on offer if
you can find nearest treatment. There are different types of HIFU.
Mine was using the Sonablate 500 system (which is what Marc Laniado is
discussing). Look up records of other type - Ablatherm.

Whatever you choose, my very best wishes for a good outcome. These
days, it's perfectly possible.
MikeHi

Good Luck Skeptic,
Hope is not lost. You will make it through this phase. I don't remember if
you mentioned your location, but if you live near NYC the post that gave two
Drs. there is a good lead. I chose Dr. Samadi. He is skilled in all 3 of the
surgical options. In his pre op consult with me, he told me that he had
extensive experience in open, lap. and robotic surgery and if needed he
could switch from the robotic to open w/o a problem.

As far as the therapy value of "meeting the devil face to face" I agree and
value that as an opportunity to make life decisions. In fact choice is a
statement of your life and ones power over Karma.

If not done so already, look up on Google - Dr. Samadi and find a text box
on his page to post questions. Give him your details and questions, he will
respond within hours. Best of luck.

Be a skeptic, follow the evidence and make your best choice. After that,
may the Force be with you.
Peter

"skeptic" <ribrass@aol.com> wrote in message
news:1195039649.626073.74770@d55g2000hsg.googlegro ups.com...
> Well after dosing myself with enough sedatives to muster up the nerve
> to go through with the biopsy (after the third different uro strongly
> suggested it), I met for a consultation and as I expected (from my
> high psa of 14 which has doubled in 7-8 months), my gleason is 7 (4+3)
> on one side and 8 (4+4) on the other, with a total of 6 cores
> cancerous.
> So, there's no re-thinking it now....my pie-in-the-sky watchful
> waiting has been bashed to the ground and it's time to join the club,
> albeit right through the front door.
> After the obligatory chest xray, bone scan and cat scan (i think) to
> see if anything has spread beyond the prostate, I will then make my
> dreaded choice for surgery (my uro thinks seeds will not do it)....in
> fact, he is already predicting/proposing RP with follow up external
> radiation.
> In other words, it seems I'm being given the most common dx and the
> most common rx...would you agree?
> While I full well know the outcome is all the same, I am still much
> more interested in laparascopic vs. open, especially due to the less
> loss of blood and almost immediate (surgical) recovery.
> I figure why not...it'll give me a head start, so to speak.
> I am willing to fly or drive anywhere if I can find an excellent
> experienced DaVinci or similar surgeon with 1,000 of these performed.
> It's taking all my will power just to type this, yet it's a strange
> form of therapy......meeting the devil face to face.
> One of my questions (feel free to comment on any of the above) is will
> the laparascopic be not recommended if the Prca has spread, say to the
> bladder? Do you have to have a "clean" well defined nodule to have
> lap RP or can they pretty much do anything?
> Thanks for listening.
>

Thank you all for your responses..it's kind of you to share them
I have heard Dr. Samadi's name mentioned more than once and the
prospect of a private room in Mt Sinai is somewhat fear-abiding.
One last quetsion (ha!...sure) what exactly do you mean by radiation
as an alternative? Seeds have been ruled out by my uro as i am too
far along...do you mean external beam radiation?
I am afraid of this as I have heard it can cause bowel
incontinence...a SE simply not acceptable for me as I already have
irritable bowel syndrome (IBS)

skeptic ... don't know where you are located but Dr. Brian Miles in Houston
is excellent. You can Google him or go here for more info:
http://drbrianmiles.com/

Jean

Skeptic, be glad you live in the vicinty of top prostate cancer centers.

To give you some idea.... a friend at work was treated at MD Anderson in
Houston with a Gleason 8; had RP chased it with chemo and started Lupron
injections. He is still kicking after 5 years going to work everyday.

He, like me, took a very aggressive stance to battling PCa. I had my
treatment at Texas Cancer Research Center and Methodist Hosptal and (Baylor
Medical College and now Methodist Research Institute)

I wish you success in your treatment.

GD
"skeptic" <ribrass@aol.com> wrote in message
news:1195066118.195502.149030@i38g2000prf.googlegr oups.com...
> Thank you all for your responses..it's kind of you to share them
> I have heard Dr. Samadi's name mentioned more than once and the
> prospect of a private room in Mt Sinai is somewhat fear-abiding.
> One last quetsion (ha!...sure) what exactly do you mean by radiation
> as an alternative? Seeds have been ruled out by my uro as i am too
> far along...do you mean external beam radiation?
> I am afraid of this as I have heard it can cause bowel
> incontinence...a SE simply not acceptable for me as I already have
> irritable bowel syndrome (IBS)
>
>

"skeptic" <ribrass@aol.com> wrote in message
> ... One last quetsion (ha!...sure) what exactly do
> you mean by radiation as an alternative? Seeds have been ruled
> out by my uro as i am too far along...do you mean external beam
> radiation? I am afraid of this as I have heard it can cause
> bowel incontinence...a SE simply not acceptable for me as I
> already have irritable bowel syndrome (IBS)

I don't know if radiation is appropriate for your case or not. I
just suggested a consultation with a radiation oncologist as the
other major form of treatment available in the U.S. (though there
are others too.)

From what I've read, brachytherapy (seeds) alone is not the best
treatment for high risk cancers - which you have. I would expect
that most radiation oncologists would either recommend external
beam radiation using IMRT or IGRT (intensity modulated radiation
therapy or image guided radiation therapy), possibly with seeds
too.

I had "high dose rate" (HDR) brachytherapy plus external beam
plus hormone therapy. So far, it still seems to be holding. My
PSA test at 3.5 years was my lowest one yet. But my case was not
as bad as yours. My highest PSA reading was a bit over 10 and my
Gleason was 4+3.

As for the bowel issues, I'm not an expert in any way, but I do
know that radiation scars and irritates the rectum. My
understanding is that bowel incontinence is unusual, but is
possible with radiation. I never got it, but I do have some
minor proctitis which I believe is due to the radiation and which
I'll probably always have.

So if you've got bowel problems now, radiation may not be the
best treatment for you - BUT be aware that you might need some
anyway even if you have surgery.

Make sure your doctors know about the IBS problem. It may
influence how they think about surgery and any possible
supplementary radiation.

Good luck.

Alan

On November 14, Alan Meyer wrote:

(snip)

> As for the bowel issues, I'm not an expert in any way, but I do know
> that radiation scars and irritates the rectum.

I have taken a quick look at PubMed, using the search parameter
"prostate cancer & radiation therapy & bowel incontinence."

Virtually all the clinical study reports are from Europe and involve
3D-CRT treatment. IOW, they are not relevant to modern tx regimens.
Still, they report very low incidence.

I am acquainted with a rad onc who uses IGRT (Image Guided RT), aka
tomotherapy. He says that the radiation is applied from 360 degrees in a
continuous sweep and that the CT scan used before each tx session
assures that the rectum is subjected to little or no radiation. Might be
worthwhile to investigate it.

I know two men who have been treated by him and neither has had a
problem. Which of course is anecdotal and should be treated as such.

A difficult decision, as the only alternative seems to be chemotherapy.

Best of luck.

Regards,

Steve J

"The thing is to expect nothing in particular, but (to) be aware of the lack
of enforceable guarantees or enforceable contracts with
nature/god/entropy as to the condition or durability of our bodies."
-- Brian Brunner, PCa survivor, December 12, 2005
Thank you, Brian.

I am located in southern New England, so NYC is do-able for me.....as
is any well experienced and recommended boston doctor...but.I will
contact Dr. Samadi.
Am I reading correctly that the consensus of these replies are all
leaning toward external beam radiation?
I thought I would get all standard open surgical RP's as suggestions.

skeptic wrote:
> do you mean external beam radiation?
> I am afraid of this as I have heard it can cause bowel
> incontinence...a SE simply not acceptable for me as I already have
> irritable bowel syndrome (IBS)

That, and my preference for damp pads over chunky diapers, is why my
radiation oncologist advised me to choose surgery over radiation.

But realize that IBS is never "diagnosed", rather presumed when no other
test for appropriate gut problems is positive. I'm fairly convinced my
IBS presumption 30 years ago was wrong, that my bigger problem was
inadequate fiber and excess processed foods. Whether it influences your
treatment choice or not, maybe it will help you mitigate your IBS.

Don't forget that many surgeons believe their educated fingers are
superior to wide-screed plasma displays in assessing real time the
direct spread of cancer from the prostate.

I.P.

skeptic wrote:
> I am located in southern New England, so NYC is do-able for me.....as
> is any well experienced and recommended boston doctor...but.I will
> contact Dr. Samadi.
> Am I reading correctly that the consensus of these replies are all
> leaning toward external beam radiation?
> I thought I would get all standard open surgical RP's as suggestions.

Many of us, including me, don't recommend treatments. An article I read
today said increasingly more physicians prefer to advise PC patients of
their options and pros and cons, then let the pt decide on his own. I
think that's appropriate, but only if the physician is qualified to
judge whether each pt is sufficiently rational, intelligent, and
informed to make that choice. Sorry, physicians, but I can't imagine
that level of involvement and training becoming commmonplace.

I.P.

skeptic wrote:

> Am I reading correctly that the consensus of these replies are all
> leaning toward external beam radiation?

I can find no such consensus at all in the replies (regardless of the
relevance of the assumed consensus).

"Steve Kramer" <skramer@cinci.rr.com> wrote in message
news:473aead1$0$16460$4c368faf@roadrunner.com...

> I'm still alive and intend on stay that way for another number of years;
> at least until October 10, 2012.
>

Sorry, Steve, the group here insists that you stay with us at least until
Oct. 10, 2052.

Alex

On Nov 14, 9:59 pm, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote:
> ...
> Many of us, including me, don't recommend treatments. An article I read
> today said increasingly more physicians prefer to advise PC patients of
> their options and pros and cons, then let the pt decide on his own. I
> think that's appropriate, but only if the physician is qualified to
> judge whether each pt is sufficiently rational, intelligent, and
> informed to make that choice. Sorry, physicians, but I can't imagine
> that level of involvement and training becoming commmonplace.

I am one of those who, like I.P. is loathe to recommend
treatments. What I recommend is consultation with more than one
kind of expert, i.e., both a surgeon and a radiation oncologist.

It is my experience that the best doctors sometimes disagree
about what is the right treatment. If the experts aren't able to
come to a clear conclusion then I, a person with no medical
training or experience, am hardly qualified to present one.

This leaves you, the patient, in a very precarious position. No
one can offer you a truly conclusive recommendation about what to
do because there is no scientific consensus about it and, even if
there was, the treatments change from year to year and any
previous consensus could become outdated.

So if the experts can't tell you what to do, how in the world are
you supposed to decide for yourself?

My inclination in this situation is to try to find a doctor I
really trust, someone who strikes me as competent, caring,
experienced, and committed to his or her patients. I still read
and ask questions but, to at least some extent, I try to get
treatment by the best doctor I can find.

I haven't done much of that in the past. I've belonged to an HMO
for 23 years and the doctors they send me to are rarely what I
would call the best. But I try to get the best advice I can and
I've sometimes seriously regretted accepting treatment from
people who didn't strike me as first rate.

Alan

I concur!
Bev


"Alex" <tuchasoffentisch@_NO_SPAM_gmail.com> wrote in message
news:Ll%_i.9890$RR6.4869@newssvr22.news.prodigy.ne t...
> "Steve Kramer" <skramer@cinci.rr.com> wrote in message
> news:473aead1$0$16460$4c368faf@roadrunner.com...
>
> > I'm still alive and intend on stay that way for another number of years;
> > at least until October 10, 2012.
> >
>
> Sorry, Steve, the group here insists that you stay with us at least until
> Oct. 10, 2052.
>
> Alex
>
>

"skeptic" <ribrass@aol.com> wrote in message
news:fd76cd55-a081-4e01-bf1e-577b27441098@w34g2000hsg.googlegroups.com...

> Am I reading correctly that the consensus of these replies are all
> leaning toward external beam radiation?
> I thought I would get all standard open surgical RP's as suggestions.

I cannot say that I read all posts with similar attention, but I have been
reading most concerning you and I do not get the feeling at all.

I am not saying that radiation is out of the question (especially in light
of the Gleason 8), but I don't recall anyone trying to dissuade your toward
it. There were, as I recall, specific references to Brachy (but your doc
said it is not a good idea in your case) and HIFU (which is not available in
the US).

I hope this does not make you feel like you are back a Square 1. I think
you are narrowing your available choices.



--
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

"Alex" <tuchasoffentisch@_NO_SPAM_gmail.com> wrote in message
news:Ll%_i.9890$RR6.4869@newssvr22.news.prodigy.ne t...
> "Steve Kramer" <skramer@cinci.rr.com> wrote in message
> news:473aead1$0$16460$4c368faf@roadrunner.com...
>
>> I'm still alive and intend on stay that way for another number of years;
>> at least until October 10, 2012.
>>
>
> Sorry, Steve, the group here insists that you stay with us at least until
> Oct. 10, 2052.

Ha! Thanks, Alex. But if it looks like I'm going past 90, I think I'll
switch to Martin Howard's preferred treatment.

Steve Kramer wrote:
> if it looks like I'm going past 90, I think I'll
> switch to Martin Howard's preferred treatment.

I'll drink to that.

I.P.

Dear Skeptic,

Sorry about your situation. You have a serious illness, but there is
help. Do not despair.

> >>After the obligatory chest xray, bone scan and cat scan (i think) to see if anything has spread beyond the prostate,

These tests will probably not show anything. Look into the
Prostascint, Doppler ultrasound, and endorectal MRI. Some may know
more about these tests than I do.

>>>> I will then make my dreaded choice for surgery (my uro thinks seeds will not do it)....in fact, he is already predicting/proposing RP with follow up external radiation. In other words, it seems I'm being given the most common dx and the most common rx...would you agree?

No, there isn't a "most common" dx" But the treatment advice sounds
familiar enough, even though it may not be the best. Much too
premature to be discussing this.

>>>> While I full well know the outcome is all the same, I am still much more interested in laparascopic vs. open, especially due to the less loss of blood and almost immediate (surgical) recovery.

What you are looking for, friend, is what some docs call a
"trifecta":

1) a cure (or best alternative), 2) preservation of continence and 3)
preservation of erectile function.

Why do intelligent men and women allow themselves to be distracted by
such promises as the potential for smaller scars, less blood loss and
quicker discharge? I can tell you my husb was in no condition to go
home 24 hrs.after his RLRP -- he was still groggy. Fortunately, he
had a mild fever, so they kept him in for a couple of days. Thais is
all about hospital economics, not what's best for the patient.

>>> I figure why not...it'll give me a head start, so to speak. I am willing to fly or drive anywhere if I can find an excellent experienced DaVinci or similar surgeon with 1,000 of these performed.

Better fly to Baltimore to see Dr. Alan Partin, head of Urology/
Oncology at at Johns Hopkins, who some consider to be the best PC
doctor in the world. And JH, according to usnews.com, is ranked as
the best hospital in the US, and also the one with the best Urology
faculty. Alternatively, consult someone of Dr. Partin's stature.
Contrary to what an iconic robotic surgeon implied recently in a
popular PC forum, Dr. Partin is skilled in and experienced in
performing *every* kind of PC surgery,inot just open. He's also smart
and ethical. Finally, Dr. Partin invented the famous nomograms that
bear his name, so he probably knows a thing or two about outcomes.

And as far as the magic number -- 1,000? Practice, practice, partice
may lead you to Carnegie Hall, but not necessarily to the Doctor's
Hall of Fame -- or even heaven.. When you evaluate a doctor, you
should look for more than technique. Probably the biggest thing
standing between you and eternity is the doctor's morals. (As
somebody said, doctors aren't great at policing themselves.) I've had
a wonderful doctor for the past 20 years, and the thing that gives me
the most comfort about him is not that he's nice and highly skilled
and respected, but that he's a person of faith. They did a poll
recently where they asked people, "Do you care if the president is
religious?" Peronally, I don't give a hoot, but when it comes to
doctors, I do. Don't care what faith they practice, even if it's
atheism.

>>>> Do you have to have a "clean" well defined nodule to have lap RP or can they pretty much do anything?

From what you've said, you do not sound like an ideal candidate for
minimally-invasive surgery. But that shouldn't worry you, unless your
overall health is poor. Open surgery is not as barbaric as they make
it sound. And note well that Dr. Partin and othe top surgeons will
not do LRP on any but the most low-risk patients. And I can tell you
that Dr. Guilloneau, probably the most experienced minimally-invasive
PC surgeon in the world, rejected my husband out-of-hand as a patient
because he had a Gleason of 7 (max was 6, among other criteria).
(Dr.G. has since relaxed his standards, don't know why.)

There is no question that robotic surgery is the way of the future.
And eventually, even the doctor will be out of the picture. I'm not
trying to rescusitate John Henry, but there are still problems with
robotic RP that need to be taken seriously: One issue brought up by
Dr. Guilloneau recently, for example, concerns the limited ability of
the surgeon to examine the lymph nodes during LRP. I just got an
email today about a new study which raised the same concerns .

As far as what do do, here's an excerpt from a response I wrote to a
newly dx guy yesterday. Hope it helps.

===> No, you should *not* rush into anything. And, if you ask me,
there is nothing better than a doctor who can say, "No!"*

My first rule is, find a doc who doesn't need your business. That
doesn't mean just financially, but includes doctors who would like to
have you as a stat to prove that a particular therapy works, or to do
another surgery so they can up their "numbers," or just for the thrill
of it.

*Nobody* should ever have prostate surgery without a darn good reason
-- I believe it should be a treatment of last resort. It's not
getting your tonsils out.

As a matter of fact, my husband's radiation oncologist, Dr. Michael
Zelefsky of MSK, recently reported very good long-term results with
IMRT (radiation) alone as a primary treatment, even with more advanced
patients. Much kinder and gentler than surgery, I would say. (My
husband had both.) Might even work for you.

Skeptic, I have to send you the continuation of above with specific
recommendations for finding experts, but in a new msg (afraid of
losing this).

Much good luck to you, and know that you will feel better eventually.
We humans can adapt to anything.


Leah

prostatecancerblog.net

Hi skeptic.

These folks are the best in the world.

You will get the best advice.

I was diagnosed in 2/05...had my open RP in March...and have been OK
since. (with the usual impotence...but dryness)

The reason that I wanted to post is that I am under a shrink's
care...and was and AM sedated with Klonopin, Xanax, and other
anti-depressants.

I came to this group in late 2004 and told them how anxious I was...and
how much I was taking to try and deal with this.

They are great guys...and gave me the best info possible.

In March 2005 I had an open RRP by Dr. Catalona here in Chicago.

I didn't even KNOW of him until I came here and was told that a top doc
was in my city.

I looked into it...and had the surgery in 3/05...and have been OK since,
thank God and the doc.

That doesn't mean that an open RRP is the best...it's just what Catalona
does.

I understand the anxiety, and if you want to talk...feel free to write
anytime.

All the best,

Ron B.

Chicago

Skeptic,

When someone reports very good long term results with anything, require
them to produce the numbers so you can scrutinize them very carefully.
Those kind of remarks are often propaganda.

Ron S.