Re: worst nightmare

[Guest guest]

OOOPS forgot to metion....

The dr that did the biopsy said " I could see a few grey areas. That I

boipsied "

YOU CANNOT SEE PINDROPS ON A BIOPSY. As that is what the dr we saw said

yestersay that the resuts say.

That also makes my suspicious about the whole appointment.

[Guest guest]

Marla --

Getting another opinion from someone you trust, and someone you can

talk to, is an excellent idea. Some other points:

1. Be very, very careful when you evaluate the claims that _anyone_

makes about the side-effects of surgery.

" Nerve-sparing surgery " does _not_ guarantee that erections will

return naturally, or with the aid of Viagra. If you look through the

posts on the " Intimacy After PC " Yahoo group, you'll read many stories

of bad surgical outcomes. Many of those happened after surgery by

perfectly good surgeons.

You're rolling the dice, and you don't _really_ know what the odds are.

2. You should get a referral to a radiation oncologist to talk about

brachytherapy. It's probably the best of the 'radiation therapy'

options for early-stage prostate cancer. It has its own problems with

side effects.

3. Prostate surgery is no picnic. It's not:

" Remove the cancer. " It's more like:

" Being careful to do minimum damage, get access to the prostate gland.

Remove it and a section of the urethra. Stitch the remaining urethra

back to the bladder. Doing minimum damage, put the patient back

together. "

4. If has surgery, it's important that it was _his decision_ to

do so. You may love him very much, but it's _his_ body, not yours.

And you never, never, never want to hear the words:

.. . . " If not for you, I wouldn't be like this. "

It sounds like he has a small, low-Gleason-grade cancer. Waiting

several months, while you learn more and figure out what to do, is a

pretty safe thing to do.

Don't do monthly PSA tests -- there's too much inter-test variation,

you'll drive yourselves crazy. Every three months should be OK.

[FWIW, I had prostate cancer surgery about a year ago, at age 62. I

had one unexpected problem -- a urethral stricture -- which is now

under good control. I'm getting good erections with injections, and

starting to see some effect from Viagra. But it hasn't been an easy

year.]

[Guest guest]

Marla --

Getting another opinion from someone you trust, and someone you can

talk to, is an excellent idea. Some other points:

1. Be very, very careful when you evaluate the claims that _anyone_

makes about the side-effects of surgery.

" Nerve-sparing surgery " does _not_ guarantee that erections will

return naturally, or with the aid of Viagra. If you look through the

posts on the " Intimacy After PC " Yahoo group, you'll read many stories

of bad surgical outcomes. Many of those happened after surgery by

perfectly good surgeons.

You're rolling the dice, and you don't _really_ know what the odds are.

2. You should get a referral to a radiation oncologist to talk about

brachytherapy. It's probably the best of the 'radiation therapy'

options for early-stage prostate cancer. It has its own problems with

side effects.

3. Prostate surgery is no picnic. It's not:

" Remove the cancer. " It's more like:

" Being careful to do minimum damage, get access to the prostate gland.

Remove it and a section of the urethra. Stitch the remaining urethra

back to the bladder. Doing minimum damage, put the patient back

together. "

4. If has surgery, it's important that it was _his decision_ to

do so. You may love him very much, but it's _his_ body, not yours.

And you never, never, never want to hear the words:

.. . . " If not for you, I wouldn't be like this. "

It sounds like he has a small, low-Gleason-grade cancer. Waiting

several months, while you learn more and figure out what to do, is a

pretty safe thing to do.

Don't do monthly PSA tests -- there's too much inter-test variation,

you'll drive yourselves crazy. Every three months should be OK.

[FWIW, I had prostate cancer surgery about a year ago, at age 62. I

had one unexpected problem -- a urethral stricture -- which is now

under good control. I'm getting good erections with injections, and

starting to see some effect from Viagra. But it hasn't been an easy

year.]

[Guest guest]

Marla --

Getting another opinion from someone you trust, and someone you can

talk to, is an excellent idea. Some other points:

1. Be very, very careful when you evaluate the claims that _anyone_

makes about the side-effects of surgery.

" Nerve-sparing surgery " does _not_ guarantee that erections will

return naturally, or with the aid of Viagra. If you look through the

posts on the " Intimacy After PC " Yahoo group, you'll read many stories

of bad surgical outcomes. Many of those happened after surgery by

perfectly good surgeons.

You're rolling the dice, and you don't _really_ know what the odds are.

2. You should get a referral to a radiation oncologist to talk about

brachytherapy. It's probably the best of the 'radiation therapy'

options for early-stage prostate cancer. It has its own problems with

side effects.

3. Prostate surgery is no picnic. It's not:

" Remove the cancer. " It's more like:

" Being careful to do minimum damage, get access to the prostate gland.

Remove it and a section of the urethra. Stitch the remaining urethra

back to the bladder. Doing minimum damage, put the patient back

together. "

4. If has surgery, it's important that it was _his decision_ to

do so. You may love him very much, but it's _his_ body, not yours.

And you never, never, never want to hear the words:

.. . . " If not for you, I wouldn't be like this. "

It sounds like he has a small, low-Gleason-grade cancer. Waiting

several months, while you learn more and figure out what to do, is a

pretty safe thing to do.

Don't do monthly PSA tests -- there's too much inter-test variation,

you'll drive yourselves crazy. Every three months should be OK.

[FWIW, I had prostate cancer surgery about a year ago, at age 62. I

had one unexpected problem -- a urethral stricture -- which is now

under good control. I'm getting good erections with injections, and

starting to see some effect from Viagra. But it hasn't been an easy

year.]

[Guest guest]

> Getting another opinion from someone you trust, and someone you can

> talk to, is an excellent idea. Some other points:

(snip)

Well said.

Regards,

Steve J

[Guest guest]

> Getting another opinion from someone you trust, and someone you can

> talk to, is an excellent idea. Some other points:

(snip)

Well said.

Regards,

Steve J

[Guest guest]

and ,

One of the facts, not myths, of prostate cancer is that not all prostate cancers are the same with respect to progression. The progression of prostate cancer IS NOT the same as lung, breast, and other cancers.

It appears that you are unusually fortunate in having a urologist who is objectively looking at the biopsy information and based on those facts NOT immediately recommending surgery. The message both of you should be concentrating on is that it appears that the cancer is very low grade and you have plenty of time to become more educated on the facts of our disease before making the best decision for both of you as how to proceed.

If, AFTER learning more about our disease and it's treatment options and their impacts on quality of life, AND consults with doctors doing more than surgery, you decide on surgery as the best choice, please also consult with a surgeon who has substantial experience in nerve-sparing operations. Yes, that option can be effective at least some of the time. The best surgeons always attempt nerve sparing. If a surgeon says he will not do that, he is not the best.

You and your husband need to calm down and start looking at the information at hand from the biopsy to independently assess his cancer. There is well-accepted published objective information based on thousands of cases world-wide to guide this process.

Although his communications skills may be less than optimal, it looks like your urologist is trying to give you this information. Yes, suggesting that a biopsy needle may have removed all the cancer is silly. It may have been a less than appropriate way to try and calm both of you down. And, YES, suggesting that you do not need to rush into surgery appears to be very responsible based on what you have said about the diagnosis.

There are three accepted risk categories for prostate cancer based on a biopsy:

Low-risk: PSA no more than 10 Gleason sum no more than 6 (3+3) Stage T1 (negative DRE) or T2A (positive DRE, cancer on 1 side)

Intermediate risk: PSA 10-20 Gleason sum 7 (3+4, better, or 4+3, worse) Stage T2B (positive DRE, cancer on both sides)

High risk: PSA more than 20 Gleason sum 8 or more (4+4 or higher) Stage T3A or worse (evidence of cancer outside the prostate)

There is additional information from the biopsy that can further define where a prostate cancer is in the low risk group. Candidates for Active Surveillance are usually in the lowest risk groups. Criteria usually include: number of biopsy needle cores with cancer: 1-3 % of cancer in any single core: less than 50% PSA Density (PSA divided by prostate size of volume from the biopsy ultrasound): less than 0.15

Criteria used by a number of institutions for starting Active Surveillance and monitoring it's progress are tabulated in the Files section of this forum in: ActiveSurveillanceCriteria.2007.pdf

If you have not already, the next step should be reading some objective books on our disease so you can better understand it. An excellent place to start is "A Primer on Prostate Cancer", available for less than $20.http://www.amazon.com/Primer-Prostate-Cancer-Empowered-Patients/dp/0965877760

No matter what your final decision on how to deal with the cancer, your husband will be living with the affects of disease for the rest of his life. The sooner you both become better educated on our disease, it's treatments, and post-treatment affects, the better.

The Best to You and Yours!

Jon in Nevada

Dx May 2006; PANIC, urologist said get it out; immediate decision to have robotic surgery. Consult with premier world-class DaVinci surgeon suggested biopsy indicated low-risk cancer and to consider Active Surveillance for a while. Did consults with proton center, and cryo-surgeon; lots of reading. Now approaching third year of Active Surveillance. May well need aggressive treatment at some point, but all indications (PSA kinetics, advanced imaging) are not now. Meanwhile, no diminished quality of life and all treatment options are improving with time.

[Guest guest]

Marla, you said the following;

" Well The Dr. did not give ANY pros to surgery. Knocked it whenever

mentioned. (he is an urologist that can do surgery) So what is up?

He gave a 40% recovery from side effect of surgery. Ok 40% that

means 60% good. You do not pass at school with those grades. So if

that is HIS patients recovery rate. THAT IS BAD.

He also said that there is NO way to do nerve sparing. That thay

always get damaged. He does not do laprosopic and won't do it on

for this surgery. Says there is no difference in recovery rate,

or impotance rate or inconstance. And he says doing it laproscopic

will not save nerves. "

This part of what you said tells me that this surgeon is being

brutally honest with you about the after effects of surgery. It is

too bad, in my opinion, that more urologists do not come closer to

the truth. During surgery, even if the nerve bundles are spared they

are pretty beat up. This is why it can up to two years for a man to

know how much erectile function will be regained. Many men talk of

having both nerve bundles spared and still do not regain natural

function. I think this doctor was simply saying that there is no way

to spare the nerves some pretty major trauma.

There is evidence coming to light that the robotic laproscopic

surgeries do not reduce the rate of side effects. It probably makes

for an easier, faster recovery, but it is still a crap shoot with

regard to incontinence and impotence.

I am confused by your assesment of 40% recovery being a good number.

40% means that 4 out of ten men will regain potency. I suspect that

is closer to the truth than the numbers most men are told.

Lots of the men here have given you very good advice. Take your time,

consider all of 's options, find a doctor whom you like. If

after you have done all that and surgery is what wants, I am

sure that you will be able to find a doctor who will chop him up.

Laurel