21+ year survivor of PC needs help

[Guest guest]

I have posted here before, but it has been a year or two since I have. I will

be a 22 year survivor next June, but need to make some decisions now and could

use some good suggestions.

My PC was Dxed 1990, with RP in June of 90

I had Radical Prostatectomy June 26, 1990

My Gleason score in 1990 was ddifferent than now, and was listed as 2+3=5 with

extensive perineural invasion. Also listed as stage C, T3

I was tracked by my oncologist for 10 years with PSA still undetectable. He

then relaeased me and said he didn't think it would ever return.

On the 12th year my PSA test was 0.1, PSA gradually elevated to at the 15th

year check it was 0.6.

I checked back with my surgeon, who sent me back to my oncologist. At this

time I was told I should have salvage radiation treatment.

The treatment was done with a newly installed trillogy machine at OSF St.

Francis Medical Center, Peoria, Illinois, near where I live.

Radiation Treatment for return of PC started on 10-19-05. I took 42 treatments

at OSF, using the Trillogy machine. Treatments ended on 12-13-05

PSA dropped to 0.1 after treatment, but now is up to a 2.9 as checked 11-8-11.

I will see my oncologist Dr. Vukov next Wed. I intend to ask for some form of

treatment be initiated. Six months ago PSA was 2.3 and Dr. Vukov thought I

should wait another 6 months and see how much the PSA jumped.

I am looking for information on what course of treatment I should be looking

for.

As of last year, no metastasis could be found.

Thanks for any suggestions, posted or to me by mail.

jackdrum1@...

[Guest guest]

> I have posted here before, but it has been a year or two since

> I have. I will be a 22 year survivor next June, but need to

> make some decisions now and could use some good suggestions.

> My PC was Dxed 1990, with RP in June of 90

....

> I will see my oncologist Dr. Vukov next Wed. I intend to ask

> for some form of treatment be initiated. Six months ago PSA

> was 2.3 and Dr. Vukov thought I should wait another 6 months

> and see how much the PSA jumped.

>

> I am looking for information on what course of treatment I

> should be looking for. As of last year, no metastasis could

> be found. Thanks for any suggestions, posted or to me by mail.

Jack,

I'm not a doctor or expert of any kind but, for whatever they are

worth, here are some thoughts about your condition.

First of all, it seems to me that your cancer is slow growing.

It took 12 years for your PSA to come back after surgery and six

years to climb up to 2.9 after radiation. You don't have a

galloping away cancer.

You didn't state your age, but I assume that you are not a very

young man since you were first diagnosed 22 years ago. If you

are in your 70's or 80's you have to consider the other threats

to your health, like heart disease or other cancers, as being

just as dangerous to you, and possibly even more dangerous, than

your PCa.

Because of those two presumed facts, your slow growing cancer and

your risk for other diseases, I would think that very aggressive

treatment is not warranted. In the first place your cancer is

not aggressive and in the second, aggressive treatments are

tougher on the body and the heart, making you more susceptible to

other health risks.

I would therefore suggest finding a medical oncologist with lots

of good PCa experience (not all med oncs have PCa experience,

some have hardly any and may be worth less than your urologist.)

Try to get a recommendation for a good one, or go to the nearest

teaching/research hospital and inquire about PCa specialists.

When you find one, explain your situation. Ask about the

possibility of taking the very lightest possible treatments,

watching what happens, and only escalating if and when the cancer

is continuing to grow at a significant pace.

The least aggressive treatments would probably use diet,

supplements, exercise, and lifestyle changes - if you aren't

already doing the best you can in those areas.

Another treatment that is non-aggressive is Avodart. Still

another is low dose estradiol or low dose bicalutamide (Casodex).

You might not need any more than that. Only if that isn't

working for you, and only if your cancer appears to be growing to

become a threat to your health, would you move into serious

androgen deprivation therapy with Lupron or an equivalent drug.

As I say, I'm not an expert. Don't take my word for any of this.

I might be totally wrong. But I suggest asking a real expert

about it.

Here is a list of cancer teaching and research hospitals where

the National Cancer Institute thinks good experts are to be

found:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

Good luck.

Alan

[Guest guest]

Thanks this is the kind of input I am looking for, and I will end up

making the decisions after I educate myself a little more.

I was 56 when I was Dxed. with PC and now am 78 in good health, except for

erections, normal aches and pains, and living knowing that it is still there and

growing.

I've had friends die of PC, and this is not the way I want to go. Heart attack

would be my preference but I will have to leave that to God almighty.

I do appreciate any and all input.

Jack

> Jack,

>

> I'm not a doctor or expert of any kind but, for whatever they are

> worth, here are some thoughts about your condition.

>

> First of all, it seems to me that your cancer is slow growing.

> It took 12 years for your PSA to come back after surgery and six

> years to climb up to 2.9 after radiation. You don't have a

> galloping away cancer.

>

>

[Guest guest]

I'm kind of wondering if perhaps some of the prostate tissue might have been

left behind with the original surgery. PSA readings might not have been as

accurate then and, even now, readings below .05 ng/ml are often considered

undetectable. I don't know the mechanics of a situation like this but I'd

suspect that spot of tissue could survive and slowly grow over those years to

the point of detection. Something to think about anyway.

[Guest guest]

> ... Ask about the possibility of taking the very lightest

> possible treatments, watching what happens, and only escalating

> if and when the cancer is continuing to grow at a significant

> pace. ...

Jack,

I've thought about this some more. Here's another strategy that

I believe Dr. " Snuffy " Myers uses.

First try to control the rising PSA with very light treatments,

e.g., pomegranate extract, resveratrol (a chemical found in red

wine), lycopene (a chemical found in cooked tomatoes), etc. +

Avodart. Get a sense of what effects that has, just to get a

baseline for how the " light " treatment works.

Then try a course of serious ADT, e.g., Lupron. But just use the

Lupron long enough to get the PSA down to undetectable. That

would be no more than a year and maybe as little as three, four,

or six months.

Then get off the Lupron and continue with the " light " treatment.

The idea is, the Lupron knocks the cancer back to almost nothing,

then the " light " treatment holds it there, maybe for years, maybe

for the rest of your life.

You might wind up with 3-6 months of Lupron, then 5 or more years

of very low PSA. When the PSA finally climbs back to 2 or 3, or

whatever the doctor thinks is enough, then another shot of Lupron

taking you back to undectable and starting the cycle again.

As I said before, I'm not a doctor, but this is something to

discuss with a real expert and see if he thinks it's a good idea.

Good luck.

Alan