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pT3b - what were your radiation outcomes after radical prostatectomy?

Posted by rlpostrp @rlpostrp, 1 day ago

I would like to read comments from anyone who was categorized a pT3b after radical prostatectomy (RP), and had radiation after their PSA started to rise:
1) At what PSA level did you start radiation, and how long after your RP was it, before your PSA started to rise as a pT3b?
2) How long did your physician wait after that PSA level rising before starting radiation?
3) For those whose cancer came back within the expect 5 years post-RP, "when" did it return (1 year later, 2 years later, 3 years...etc.)?
4) What were short term and long term consequences of radiation? I have heard horror stories about radiation" permanent ED, bladder cancer, severe pain, etc. I heard it is "40" consecutive DAILY sessions of radiation. How did that go for those who had it?
My current status is as follows:
3.5 months post-RP. PSA is now < 0.1 ng/ml. But, I had cribriform glands, EPE, surgical margins, and slight left seminal vesicle invasion - thus the pT3b category. I was and remain a Gleason 3+4 = 7 with only 6-10-% cells being "4", so really was "almost" a Gleason 6.
I really hate that my life has now changed "forever." The first year, I will have a PSA every three months. If it remains 0.1 ng/ml, then in year two, I go to PSA levels every six months, and onward until/if my PSA shows 0.2 ng/ml or higher. That is why my physician said we will very likely start radiation. My life will be a constant worry, especially filled with anxiety in this first year post-RP waiting for my next PSA value, nervously hoping it will still be 0.1 ng/ml.

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surftohealth88 | @surftohealth88 | 1 day ago

I am so sorry to hear that you are very worried about future PSA tests, but try to look at them the same way you did during your AS. There is no difference, really, if you start thinking that way. Every PSA you took before RP could have been "bad news" - right ? The same way you took action when your PSA and other findings showed that it was time to do something about it, you will take appropriate steps when and IF time comes.

Now, regarding your "almost" 6, I do not understand it. You had positive margins and vesicle invasion and cribriform - ALL pointing to very serious and aggressive character of your cancer ! According to some pathology experts as soon as you have cribriform one is not even just 7 , but 7+. Your cancer was already getting out of the gland that contained highly aggressive cells !!!

Yes, cancer changes lives forever in many ways, but so does any other serious disease. One can not jump out of ones own skin unfortunately : (, so we have to work on acceptance and move forward < 3 .

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rlpostrp | @rlpostrp | 1 day ago
In reply to @surftohealth88 "I am so sorry to hear that you are very worried about future PSA tests, but..." + (show)
@surftohealth88

I am so sorry to hear that you are very worried about future PSA tests, but try to look at them the same way you did during your AS. There is no difference, really, if you start thinking that way. Every PSA you took before RP could have been "bad news" - right ? The same way you took action when your PSA and other findings showed that it was time to do something about it, you will take appropriate steps when and IF time comes.

Now, regarding your "almost" 6, I do not understand it. You had positive margins and vesicle invasion and cribriform - ALL pointing to very serious and aggressive character of your cancer ! According to some pathology experts as soon as you have cribriform one is not even just 7 , but 7+. Your cancer was already getting out of the gland that contained highly aggressive cells !!!

Yes, cancer changes lives forever in many ways, but so does any other serious disease. One can not jump out of ones own skin unfortunately : (, so we have to work on acceptance and move forward < 3 .

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Yes...thanks...that was my point: you can have what appears to be a favorable Gleason score that was barely a 3+4=7 with just 6-10% "4" cells - all others being "3" cells, when in fact all of those other things are going on that you and your urologist have no clue about until the post-RP surgical pathology and microscopic report is provided that has all of the ugly things never seen or known from a mere biopsy. My urologist was not "nonchalant", but was very confident that "we caught this early" and you'll be here ("alive") well beyond 15 years from now. Well...he's not talking that way anymore, now that the EPE, Surgical Margins, Cribriform glands, and seminal vesicle invasion with a final category of pT3b was assigned and were all noted in the surgical pathology report. Now he is saying: "you seem to have an aggressive form of cancer despite the Gleason score, and being pT3b, we'll have to talk about radiation at some point,

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surftohealth88 | @surftohealth88 | 1 day ago
In reply to @rlpostrp "Yes...thanks...that was my point: you can have what appears to be a favorable Gleason score that..." + (show)
@rlpostrp

Yes...thanks...that was my point: you can have what appears to be a favorable Gleason score that was barely a 3+4=7 with just 6-10% "4" cells - all others being "3" cells, when in fact all of those other things are going on that you and your urologist have no clue about until the post-RP surgical pathology and microscopic report is provided that has all of the ugly things never seen or known from a mere biopsy. My urologist was not "nonchalant", but was very confident that "we caught this early" and you'll be here ("alive") well beyond 15 years from now. Well...he's not talking that way anymore, now that the EPE, Surgical Margins, Cribriform glands, and seminal vesicle invasion with a final category of pT3b was assigned and were all noted in the surgical pathology report. Now he is saying: "you seem to have an aggressive form of cancer despite the Gleason score, and being pT3b, we'll have to talk about radiation at some point,

Jump to this post

Yes, unfortunately it is often the case that only after gland is taken out and full examination is performed one knows exact stage and extent of the cancer. But now that you and your doctor know it, you can as a team make great plan for further successful treatment < 3 .
Many times salvage radiation is curative ! There are so many different available treatments for you - I really hope that some of more experienced members will jump in soon to tell you about them. There is also sooooo much research done and so many new treatments in a pipeline that I personally do not see why your doctor is not mentioning "15" years any more - are you treated in big cancer center of excellence ? We here have members that are living full lives with stage 4 PC for many , many years and will be living probably longer than most people that are not on this forum and have some other health issues and are not even aware of them - just go into "search" field and look for their posts : )))

I completely understand your fears and worry - I came here in March (representing my husband) and was a complete nervous wrack and thought that sky is falling : (((, but with support, help and inspirational personal stories of PC veterans here I picked myself up and am plowing ahead ;).
Just keep posting here and keep learning about PC and you will see, slowly but surely you will again feel in control of things and will see how many options you have for beating this crazy condition. There will be some times in the future when you will have to jump into action and do some additional treatments but after that period there will again be a long period of time when you will be just observing situation and enjoying your life. : ) < 3

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