I get furious at doctors like that.

 I had an RP on 5/1/02, and so far very good results despite margins that
were not clear.  So I have no regrets.  Someone on this forum said, once you
make your decision, go forward and don't look back.  I think that's very
good advice.  However, had the RP failed, I probably would be looking back.
I had no question about the RP.  It was my decision from the beginning.  An
important part of this decision was knowing that I had radiation to fall
back on if the RP failed. I did not get a second opinion (PSA in the 5's and
3+3 Gleason on biopsy).  Suspecting I had cancer, I had made up my mind for
the RP before biopsy if the numbers were not too bad.  So I didnt  want to
wait when I got the news.

We wouldn't have chosen an alternative treatment.

We were given various options and the specialist said what he would choose
for himself in the same circumstances. We believed him.

No. We didn't rush.

We didn't have a second opinion - we were happy with our first.

Ah - never do that. If they knew as much as the specialists they'd be
specialists.

But I'm speaking as a Brit.

Mary

My PSA was climbing significantly so I got a bx. It established G8
cancer, so further biopsies were moot. I was a healthy, active 60-yo
with no other known threats to my life, and had no interest in standing
by while PC killed me. I researched treatments intensively (books,
studies, specialists in RP. RT, and ADT; anecdotal stuff tells me
nothing about my odds) for many weeks until a clear winner emerged.
Scheduled my tx, got it about 10 weeks post-bx, studied additional
preemptive ADT even more thoroughly, rejected it, and got on with my
life. Zero second thoughts because my first thoughts (and actions) and
my personal and family priorities were thoroughly researched. Total
involvement, from bx to full recovery from surgery to final adjuvant tx
decision, roughly 6 months. All that's left now is flapping my fingers
about it and changing pads until my cancer comes back.

Followup opinions after bx were straightforward: my first uro was a
surgeon, so I wanted to consult radiation and medical (ADT, chemo)
experts for reality checks. Studied those topics in the same sources,
got appointments, developed lists of questions for each, got them
answered, informed them of my priorities in life, and got their tx
recommendations (they were unanimous with surgery in my case, not even
considering my other abdominal cancer), and scheduled treatment to
coincide with the end of my windsurfing season. All in all, pretty cut
and dried. Would have had some real soul-searching to do if it had
evolved at the beginning of summer, but I'm guessing it would have kept
me off the water for only 5-6 weeks.

From first PSA alert to final treatment, I wound up consulting
something like 6-8 physicians, mostly oncs, about my PC. Only one never
did a DRE: the uro onc surgeon who removed my prostate. By that time we
knew I had PC and no tests showed any mets, so what good was one more
finger up the wazoo?

I.P.

No.

No.

Going with your title, I don't have "regrets".  I have an honest
acceptance of and dislike for the side effects of the treatment.

I don't like having a low libido or the semi-firm erections.  These are
barely adequate for penetration.  I miss the jolt of semen at orgasm.
I don't like having to take a little Vitamin-V to perk things up.

I realize that this is considered a "good outcome"  as far as side
effects go.

It'll be another year or two before I'll know if the seeds and IMRT got
the cancer.  I remain hopeful there and figure we gave it our best
shot.

Meanwhile, my focus is building my business, working off the Lupron
belly, getting my life back on track, and "exercising" my plumbing.

-kh

 It would be helpful to know your PSA and Gleason numbers. If they are
relatively low (a Gleason of 3+3 and a PSA around 6), with small percentages
of cancer in your biopsy needles, it's likely that you don't have to rush to
do anything immediately. If they are high, chances are you should focus on
reaching a treatment decision soon.
 If one can be considered lucky to be diagnosed with PCa, I lucked out with
a Gleason 6 and a PSA of 6, with cancer in 10% or less in two of 12 needles.
I first saw a surgeon who was ready to cut the following week. I then
visited a group of physicians who specialize in prostate cancer treatment,
and spent $600 on a consultation that literally ran for hours. I was sent
home with a videotape of the conversation we'd just had, so I could review
it as often as I liked.
 I've opted, for the time being, to do "watchful waiting," meaning
quarterly PSA readings and semiannual color doppler ultrasounds, plus a
lower-fat, less-meat diet and lots of supplements. I can't demonstrate a
causal relationship, but my PSA has fallen from 6-plus at diagnosis to 3.3 a
year later. The color doppler ultrasound shows no enlargement of the cancer.
I am thinking about taking Proscar (dropping any supplements that could
interfere) to cut the PSA by another 50%.
 I am NOT offering this as a strategy for you. Nor do I regard this as more
than an interim strategy for myself; it is possible my PSA will kick up, in
which case it will be time for active treatment.
 What I am suggesting is that you first determine whether your PCa presents
an imminent risk (high Gleason, high PSA, etc.) or one that is longer-term.
In either case, find a specialist in the field who will give you the time,
attention and answers you need, who can discuss the treatment options
available to you based on your own situation, with the risks that accompany
each and, if active treatment is needed, can refer you to best-in-class
providers of the treatment option you select.

Good luck!

Alex

From: cmdrdata@mail.com (cmdrdata)

I am procrastinating in my choice of treatment. because of this:

1. If you can turn the clock back and choose an alternate treatment,
would you do so and which one will you pick?

====> i'm one of the few who DID change my original choice of treatment.
i was going to go with seeds, but switched to surgery.  and no, i'm not
sorry i did.  
-------

2. Knowing what you know now, would you have waited instead of rushing
for a treatment?

===> no, i was given 60 days to consider a choice and they would
schedule appts with both surgery and radiation groups.  i had the cancer
inside me and it was chewing me up.   i knew enough about the disease to
know that you can not live WITH IT.   so, i had to kill it or remove it.
and the sooner, the better.

-------

3. How to get the most of your second opinion?

===> research, research, research.  there is no short answer.  the more
knowledge you have, the better opportunity you have to make a decision
that is best for you and your case.

each case is different.  each case has to stand on it's own merit. that
is why there are so many different choices out there.  if it was as
simple as you have pca, then you get this one type of treatment and
you're cured, we would all be standing in line for that one type of
treatment.  but we are not.

if you look at the conversation in these threads.  they are as different
as night and day.   eating right or not eating right......   fat foods
vs low fat foods..... taking vitamins and other herbs vs not taking
them....... surgery or no surgery....  watchful waiting vs taking
action.....   ED meds vs injections.....   you name it, and there is an
opposite approach to what you are wanting.

it's one thing to ask what others think.  it's another to base your
choice of treatment from the comments you get at a newsgroup.  there
isn't enough data base.  

look at this newsgroup for example.   how many men in the whole entire
world have prostate cancer?  and look at how many people posting here?
does 500 to 600 posts equate to the 6 billion people on this world as
base a decision on a choice of treatment?

the one thing that i have learned from this newsgroup in my 12 years of
being here is that there are VERY few individuals who have said that
they made the wrong choice in their type of treatment.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional    
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
http://community.webtv.net/PALMER_ENT/doc

I believe, you need to do that prior to your choice.
Get differing opinions, take them home shake the dice.

I never rushed for treatment...I could have, but learned there are many
alternatives to this cancer.

Bring in slides, and work done by first....
Next see the 3rd......Why not.   You do not have to be in a hurry.
300.00 is small peanuts considering your life.
You are not a car, and have no transmission.
You have prostate cancer, and depending on the scope of the disease, you
need to decide between, Radiation, Chemo, or Surgery.
If you need help, send me a letter......
You will do fine

I considered several factors, the most important was that the PSA was
low, but my urologist was concerned about the rate of increase between
the annual check. The other issue was my age of 60 and what the outcome
under the best of conditions could be if the cancer began to spread. He
did a biopsy that confirmed that the prostate had several areas of
cancer cells and a bone scan (I studied the reports) showed no evidence
of the cancer leaving the prostate at that point.

It didn't take be long to decide that getting the cancer out while I
still had a reasonable chance was the safest option even considering
the potential for side effects. I have had the MD for a long time and
had the utmost confidence in his competence, Board Certified, good med
school and residency and almost 20 years as an MD. He recommended that
I speak to one of his associates about robotic removal and encouraged
me to get a totally second opinion. I decided not to do that and I
think I made a reasonable decision.

However, in hindsight, a second or third opinion would have been worth
the cost just for confirmation and peace of mind.

Mike

I'm satisfied with my choice (radiation).

For me, the worst emotional time was the period between
diagnosis and treatment.  During that time I imagined the
cancer growing inside me while I waited and waited to get
all the scheduled procedures.

When I started treatment (for me, the first treatment was
a Casodex pill and a shot of Lupron) I felt a great sense
of relief - at last I was fighting this thing.

BUT! (a big BUT here) it is important that you have confidence
in the doctor and method you have selected for treatment.  If
you do not, then work hard to find someone better in short
order.  I would NOT rush to treatment with a doctor in whom
I did not have confidence.

My first doctor was a urologist surgeon.  I didn't care for him
and didn't want him to operate on me.  I also had some emotional
biases against surgery (you dislike the poison you know.  I
had had a botched surgery once, but never had radiation.)

I asked for a referral to a radiation oncologist and got two
of them, one of which was to a research department in the
organization where I worked (the National Cancer Institute).
I liked both of the rad oncs I met.  Both spent over an hour
with me answering every conceivable question.  Both offered
follow up replies to questions I called or emailed to them.  I
would have been happy to be treated by either one.

Both of the rad oncs wanted my biopsy slides which they
sent to their pathology departments for evaluation.  Both
did DREs.  One, the NCI, offered me a whole set of tests
to see if I qualified for one of their clinical trials - which I
did.

Have a look at:

http://www.prostate-cancer.org/
http://www.ustoo.com/
http://www.phoenix5.org/

Here's a page on 10 questions to ask a doctor:

http://www.phoenix5.org/books/Mayo/MayoChap7-5.html

Best of luck.

   Alan

No.  Tomorrow will be the second anniversary of my seed implantation, and
I have no regrets or reason to wish for a change.

I didn't rush; the uro explained that my Gleason/T1c status meant there
was time to make an informed decision, and that's what I tried to do.  As
someone else said in this thread: research, research, research -- then
make up your mind and don't look back.  I was treated about 5 months after
diagnosis.

After educating myself I felt I trusted the uro enough to go ahead with
treatment, which I knew involved consulting a radiation oncologist.
When the rad onc agreed that the treatment choice made sense, I was
content.

If you too have a low Gleason score and the positive DRE isn't too large,
you'll have time to satisfy yourself you know what you're getting into,
and why.  If the cancer's progress is more advanced you had probably
better get on with some form of treatment reasonably soon -- but a few
days of research would help you feel better about your choice.

My PSA was climbing slowly for several years.  My family dr prescribed
antibiotics twice during this time, to see if it was and infection.
Still went up,  biopsy scheduled for Sept last year, low Gleason, low
PC, but it was there.  Dr said I had time, could wait etc.

Researched  various options, and decided that brachetherapy was least
invasive, with best possible results for me.  If sex is important to
you,as it was for me, then brachetherapy is, in my opinion, the best.

It has been a year.  I am satisfied w results.  Sex is certainly less
messier than before.

Had a friend diagnosed at same time, he chose RP.   He was back a work
before me.   As far as I know, he is happy w his choice too.

In matters like this, you have to accept that your choice is final.

Regrets  and second thoughts will destroy you.

BTW,  the cost of my brachetherapy was slightly over $30,000. $300 for
second opinion is acceptable.

As to friends and acquaintances, ignore their advice, unless they have
1st hand experience.

If I could turn the clock back, I would choose RRP.  But, it was my only
choice at 46.  However, if I had the same dx and numbers now, as I had in
2000, I'd go with RLRP.

Nope.  I still would have waited the length I did.  That was a really nice
cruise.  However, there is a possible argument that if I hadn't waited that
two weeks extra, I might now be cured -- the cancer was that close to the
margin.  But, I don't think the two weeks made a difference to the cancer in
the seminal vesicles.

I did not get one, but I was really sure of my doc.  Knowing what I know
now, I probably would have had a second look at the Gleason, but doubt that
it would have changed my choice.  As it turns out, the post op Gleason was
no different.

IMRT was the treatment; watchful waiting would have been the
alternative, and then this would have been available (on the cutting
edge of radiation treatment currently):

http://www.igrt.com/

As it was, I waited 4 months.  In retrospect, I would have waited
longer.

Absolutely. One opinion is NOT recommended IMO.  Get at least one from
a surgeon, one from an external radiation onc, one from a seeds onc.
Each is biased in favor of their specialty and by hearing them all
out, you can sort the pros and cons and decide what is best (or what
combination) for you.

As far as waiting, if you are low PSA, low Gleason, confined tumor,
AND you are concerned about sex, you might seriously consider this,
because no matter what the treatment, your sex life WILL suffer.
Anybody who says otherwise is full of shi* or in denial as far as I'm
concerned.

It's pointless to ponder because you will only ask yourself this
question if the results are not as good as you hoped.  Yet there is no
reason to think an alternate treatment is automatically better in
retrospect.  The alternate could have turned out the same, better, or
worse.  So no point in playing that mind game.

Yes, I think I would have waited longer... maybe.  I was like a cat on
a hot tin roof wanting to get things over with and waiting would have
prolonged that.  So on the one hand I think I could have waited longer
but on the other hand I have no reason to think waiting longer would
have made any difference.  So my advice is to be sure and take as much
time as you need to study up on your options and don't rush.  But
there is no point in delaying just to delay.  Once you know what you
need to know you should proceed - the longer you wait the longer the
cancer has to grow and spread.

I had every opportunity to go with one of the best open surgeons
around, Dr. Brooks at Stanford.  I opted for lap surgery with a guy who
seemed equally qualified.  I'm still leaking and of course little
Willie is mostly dormant although he was already a bit lazy before
surgery.  If I had to do it over again, I'd go with Dr. Brooks -
someone who everybody knows is good rather than with someone who seems
OK with no negatives.  There is a difference.

I didn't wait and knowing what I know now, I wouldn't wait again.  When
I got the path report, they found a small, well-focused, 2mm piece of
CA right at the margin with no evidence of penetratation beyond the
margin.  So far, at 3+ years my PSA is still undetectable but there's
no telling how much more that thing would have grown in another two or
four or six months - it only takes a few cells on the other side.  Goes
to show that even low PSA, Gleason 6 biopsies can throw you a curve.
Trouble is, you never know what would have happened had you done
something else.  In my case, maybe Dr. Brooks would have sliced right
through that 2mm thing and I'd be worse off than I am.  All you can do
is lots of homework and hope for the best.
Dave Perry