Undecided Gleason Score 4+3=7 and PSA almost forty.

Congratulations on making the decision. I’m 56 and 8 weeks post RARP. Ultimately for me, it was about keeping radiation in the “back pocket” in case it comes back. I firmly believe this was the right call for me and hopefully you will as well. I can tell you 8 weeks post that I feel Completely normal except for the continual urge to pee and the annoying leakage that has me changing pads 2-3 times/day. I believe I was 3+4 before and pathology came back 4+5 so thank God I didn't wait a day longer. Best of luck to you!

@lastminuteundecided
Great to hear you have made it through the surgery and are feeling pretty good since you’re able to write this long message.

Definitely come back and tell us what was found when they did the biopsy of your prostate. That information really does let you know what’s going to happen in the future.

Glad you made the decision. While Gleason 4+3 alone is borderline, PSA of almost 40 tips the scales into serious — my PSA was only in the high 60s when my cancer had already metastasised to my spine.

As many have already commented, NCCN and other guidelines recommend that a very high PSA, and a Gleason 7 (4+3) require definitive treatment, not observation, unless one has some other terminal illness that will kill the person soon. A genomic test such as GPS can further clarify the aggressiveness of the biology of your cancer. Your next steps should be to evaluate the pros and cons of the different treatment options, since you are not an ideal candidate for active surveillance.

@lastminuteundecided, I always appreciate when people post an update, especially when the guys in the forum helped.

How is recovery going now a week or so out since surgery?

Day 12 Post op update. Sorry for the long delay. Been trying to figure this post op thing out and was hoping to have pathology report tomorrow to give a fuller update but it’s still not ready. I promise to update more regularly. Thanks again for all your help!

I’m still glad on the decision to have surgery and keeping radiation in the back pocket. I’m now 12 days post surgery. The first few days were a bit getting used to the catheter and on day 4 had to go back to the doctor to get the catheter replaced with a new one, it wasn’t draining properly and would not drain my bladder. Glad I went in when I did and didn’t wait any longer. Have to say I felt every bump on the drive in. Think my wife was getting me back for my driving when she was pregnant.🤣🤣 Also, have to say the thought of replacing the catheter was worse than it actually was…especially after the pain from my full bladder, it was a relief to get it changed out. I also had to learn to drain it once and awhile manually by pushing it back in a little to help it drain.

During that visit they were also worried my urethra had partially disconnected from my bladder cause I was getting liquid coming out of my JP drain incision. They were worried it may be urine. Luckily it had not, it was from all the pressure of my full bladder pushing some liquid out of the JP incision.

On day 7 I was able to get the catheter removed. I sort of missed the security of knowing I wouldn’t leak when out in public, unlike after it was removed. It took a little to get used to leaking. I seem to still be going through a lot of pads during the day. While sleeping I seem to now hold it most of the night and be able to drain my full bladder fully when I first wake up. It seems harder to do though during the day and the leaking gets worse. Hopefully it will get better during the day. I think it will.

I do have a weird vibration / pulsing down there that started on day 9. Think it has to do with some bladder spasms or from the nerves down there firing off. Hopefully I’ll know more tomorrow regarding that after talking with the Dr.

I’m also the lucky owner of a JP drain. The JP drain is still pulling out about 75-100ml a day so not sure when I’ll have that removed. It may still be a good week or more, but no clue.

I’ll post more tomorrow after I meet with my surgeon.

Thanks again for all your comments and help!!!!

Pathology back. Mostly localized with some in the right nerve bundle. Lymph nodes came back clean. Now just wait on next PSA test I guess.

By chance did anyone have a JP drain that kept producing large amounts of fluid. Seems like I’m at around 125 ml a day and it’s day 16. Would love to find a way to get the drainage to slow. Any ideas…thoughts????

Thanks!

Update: Getting frustrated. Has anyone had a JP drain in longer than 3 weeks after surgery? I was hoping to have it out on day 5 but tomorrow will be day 28 and it is producing 200-300ml a day.

Not typical even when lymph nodes are removed. Possible that drainage time can extend if large number of lymph nodes removed. Age and other health factors can also affect wound healing time.

I would go back to surgeon to determine cause. Expect to be asked if drainage amount increased or decreased during the 28 days. Also expect to be asked if any fever during past week.

To be courteously blunt: There is NO decision - have the radical prostatectomy. I had a 6.1 ng/ml PSA, and I was barely a Gleason 3+4=7 with just 6-10% of cells rated "4", but...my urologist assertively said "I'm taking your prostate." He doesn't believe in active surveillance ("You HAVE cancer...it will not go away or heal...it will only get worse with Active Surveillance"). I am glad that I acquiesced. My surgical pathology report was far worse than he and I would have imagined, and I would have been in big trouble in two years if I had done Active Surveillance. It proved what I now refer to as saying: the "Gleason Score is just the tip of the iceberg." The Gleason says nothing about the pathological and prostatic anatomical features and nature of your cancer. Lurking beneath the "still waters" of that "tip of the iceberg", I had Extraprostatic Extension (EPE), thus, surgical margins (cancer was left in my body after surgery), Cribriform glands, and left seminal vesicle invasion with no actual tumor or nodule(s). My Gleason would have suggested a T1 - at worst a T2 - cancer, but I am actually a pT3b with a near-guarantee that the cancer will return within 5 years (25-50%...my doctor said his experience is right around 30% recurrence in his practice). If I had not had the surgery, I would have likely cut off 10 or more years of my life, even with prostate cancer being a slower growing cancer. I am only 10-months post-op, but so far so good: three PSA levels at < 0.1 ng/ml, and one Ultra-sensitive PSA of 0.006 ng/ml. My personal advice is: have the prostatectomy, so you will live as long as you can.