pT3b - what were your radiation outcomes after radical prostatectomy?

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 .

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,

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

I figured that your restriction, that you only wanted people with a T3b stage to answer, would end up in almost no responses. Actual results were zero.

Many people with different stages of prostate cancer could answer your question, And supply you with some useful feedback, But your limitation was too strict.

You might post a message without asking for the T3B stage requirement, And you will get a lot of responses.

I had a T2c and the prostatectomy gave me 3 1/2 years Before a reoccurrence. I had salvage radiation when my PSA hit .2 and 2 1/2 years later it came back again. Two more reoccurrences later I’ve gone 20 months undetectable. The T2c Means that the cancer has gotten into both sides of my prostate, but not outside it. This started 15 years ago And four years ago, I found out I had BRCA2 and that is the reason it keeps coming back. I am now on a lifetime of ADT and ARSI’s followed by a PARP Inhibitor when they fail.. Problem is it’s probably going to come back so that lifetime is going to be limited by whatever drugs are available when I Have my next reoccurrence.

Your cribriform, ECE and positivity margins call for long term ADT and ARSI. Something to discuss with your doctor.

You really should get a decipher test. That will tell you whether or not your cancer is likely to reoccur. In your case, it’s probably going to be very likely.

Thanks for the message. The first question posed via e-mail for my Urologist was: "Why didn't you do the Decipher test?" His first response was that my insurance wouldn't pay for it. I was suspicious of that. I then told him that "I deserved to know of any requested test that was denied, so I could consider paying cash for it." That e-mail exchange was about 3 weeks ago, well after my biopsy in mid-December 2024. Then last week at my 3-month, post-catheter removal follow-up, I asked again. At that point he said that it is moot for two reasons: 1) You only do the Decipher test on biopsied tissue, not post-radical prostatectomy (RP) surgical tissue, and...2) The surgical pathology report revealed everything we need to know: EPE, Surgical Margins, Cribriform Glands, Left Seminal Vesicle invasion.
I have read numerous posts and comments that infer that the Decipher test can be done on post-RP surgical tissue, and when I said that to my Urologist, his face kind of scrunched up like "what?", and he said: "no, and again at this point the Decipher test won't tell us anything that we don't know now." I don't know who or what to believe.
Also, I am confused by your description above. You say "I had a T2c and the prostatectomy gave me 3 1/2 years before reoccurrence." That tells me that your prostate has been removed. But then you offer: "The T2c means that the cancer has gotten into both sides of my prostate", conveying that you still have your prostate, but not outside it."
I did have a Genetic Screening (oral/buccal swab) done that included dozens and dozens of genes including BRCA 1 and BRCA2. I was 100% Negative for any/all cancer genes or mutations of any kind. I had one guy comment that there are many genes, and that my screening likely didn't include them. Don't know what he was talking about...I was screened for what was important in prostate cancer and all cancers in general.

From what you’re saying, you are working with the wrong person. A urologist is not educated to handle, advanced prostate cancer cases, They are urologist, and and some of them are surgeons.

Fortunately, you have a low Gleason score, After surgery, they didn’t find anything more apparently, so you have a very slow growing cancer. Frequently they find higher Gleason score tissue, but in your case that didn’t happen.

You need to find yourself a center of excellence or a Genito Urinary oncologist To manage your prostate cancer case. You actually never need to speak to the urologist again, unless you have a problem that the urologist is trained to do, Like issues with the urinary track.

If you have positive margins and all of the other issues, you’ve mentioned then radiation is in your future. The thing is your PSA is undetectable at this point at < .1. Normally, you don’t do radiation until the PSA hits .2, but in your case with positive margins and other issues some doctors probably will want to do radiation sooner rather than later.

Get a first and second opinion from a doctor that specializes in advanced prostate cancer.

To ripostrp. I am happy to repond to your questions. I was pT2b.

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?
My first PSA post-RP was undetectable. My second PSA three months later was 0.5. I was devastated when I saw this. I was just beginning to approach normalcy with my urinary continence and knew that I was likely to have excretion problems with the RT.

2) How long did your physician wait after that PSA level rising before starting radiation?
After seeing my second PSA, my urologist immediately referred me to a radiation oncologist (RO) and ordered a PSMA-PET. The scan was negative and my RO decided to radiate the prostate bed (28 sessions) and associated lymph nodes. I also began six months of ADT. Radiation began about 10 weeks after the Eligard shot.

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.)?
My recurrence happened six months after RP.

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 first week of radiation therapy was uneventful. You don't feel anything and it is over in 10-15 minutes. In the second week, diarrhea began and I started on a daily immodium. I stopped consuming caffeine and dairy, which helped a bit. I started peeing more and there was greater urgency to be near a bathroom. I probably was peeing 20 times a day and also was up at night 2 or 3 times as I was concerned about wetting the bed (which I did twice). Fatigue started to increase and I was napping for an hour or more each day. I only had 28 treatments so I was finished in about 6 weeks. I was very glad to say goodbye to the linear accelerator. Fatigue cleared up quickly but the bowel issues remained. I stopped the daily immodium about a week after treatment ended and switched to every other day. That lasted 2-3 months. I then started taking a probiotic instead of immodium. Frequency of urination diminished over time but I'm still not normal more than two years later. (Prolonged dripping and dribbling, which I attribute to RP.) I tolerated the ADT well except for the nocturia. My testosterone level returned to normal in about a year. And, I am happy to report that my PSA is still undetectable after two years. Good luck to you. You will get through this and it will go quickly.

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?
I'm not sure about the pT3b part but we scheduled SRT at .091 up from .039 in a 3 mos period.

2) How long did your physician wait after that PSA level rising before starting radiation?
We scheduled the start on the day I saw him fo the follow up where the PSA test showed .091, it took a month or so to get the appointments set up, markers etc.. Also did a PSMA PET scan during that time, it was negative.
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.)?
...about 8 mos.

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?

In my opinion, It's hard to tell what is actually caused by the radiation, I also went on Orgovyx. I'm a "give me all ya got doc" mindset and he gets it. So you get the side effects of the drug, assuming you take it. I'm also going through this at one of the times in life when your body is kind of slowing down anyway, I was 61. So how much is the radiation, how much is the ADT meds and how much is just gettin' old?
I would say it's safe to say the radiation caused pretty severe fatigue at the far end, I was on the 39 treatment plan. I may have had some Urinary Urgency, again, I also just had my prostate removed and wasn't really fully healed from the surgery...and late in the game some occasional diarrhea.

I’m still inside the 5 year period where some research would tell you that other side effects may appear.

How did it go? I was lucky in a couple points here. They like your bladder full and bowels empty.
A) I went in the am and I’m one of those folks you can set a watch by where the morning “constitutional is concerned. So get up, coffee, poop. 2nd requirement done
B) Drank about one 20 ounce bottle of water and between the coffee/caffeine and water I was good to go for just about every session. 1st requirement done.
It can be a bit painful because you feel the need so bad, but, I didn’t have any accidents on “the table” which is not an uncommon thing. My center was really good about schedule, if you were a 9am appt, you were on the table by 9:05 absolute latest except maybe once or twice, then they get you off quick and several rest rooms nearby.
If you aren’t quite full enough the get you off the table, send you to the coffee / juice center and you go to town. They then find a whole in the schedule to get you zapped as soon as they can. I never had to do that.
Eat breakfast in the pick up and off to the gym.
Best of luck to you!

Are you .1 with a micro PSA test? I started .03 after RP and sat at .4 for 6 months then doubled every 6 months until I hit .22 which triggered BCR and started Lupron and radiation 3 months later at .24. The good news is velocity slowed over that 3 month period. Radiation EBRT and ADT pretty much sucked for me. They did not recommend a block to protect my rectum which they hit and I developed bladder spasms. After blowing up on the table twice at the end of 4 weeks I told them I would not get back on the table until they did something for me. At $2700 a pop for each session of radiation they got me something for my urgency. I finished radiation March 7 and ADT July 14 so waiting for my first PSA/T test in September. As mentioned they hit my rectum and crapped all over myself for about a month. Couldn't make it 20' to the bathroom. ADT was manageable and I kept active albeit at a lower intensity but exercise definitely helped with ADT side effects. Some days I felt lousy and didn't push through. Last 3 months was with Orgovyx and close to a month done I am feeling much better and my energy is returning. I went anemic on Lupron and returned to normal after 3 months of Orgovyx. Not sure if that is typical but an interesting side by side comparison.

That is so unfortunate; surprised they hit the rectum so badly.
I had no spacer either (not recommended for salvage rad) but a cone beam Xray every day before tx to be sure the rectum was in the same position as during the simulation.
Minimal diarrhea at end of tx but nothing like you experienced.
Phil