Gleason7(3+4) - treatment options recommendation

Sorry to hear of your cancer, but you are in a good place here on this blog to receive our collective advice and recommendations ("qualified" of course) on what our experiences were. To that end, I haven't written this in several months, but here is what I discovered/realized after I went with my urologist's recommendation for the DaVinci single-incision, robotic assisted radical prostatectomy:
The Gleason score is just the "tip of the iceberg" called prostate cancer. I too was a Gleason 3 + 4 = 7 with perineural invasion. That is "all" that can usually be accurately observed with biopsy slides. When I asked about Active Surveillance and radiation, my urologist was adamant saying "I never do Active Surveillance...it just gives your cancer two or so years to slowly grow and get worse...it will NOT go away...YOU HAVE CANCER." As for radiation, he said "you never want to do radiation "before" surgery because radiation fries your prostate, turning it into a little walnut size chunk of concrete that is nearly impossible to remove surgically thereafter." So...he flatly told me: "I am taking your prostate." It was a very firm statement. So...
I AM GLAD I HAD THE SURGERY. The hidden, unseen, larger part of that "iceberg" is all of the other pathology - often ominous - that a biopsy can't tell you. I had Extraprostatic Extension ("EPE") where the tumor breaks through the membranous capsule that surrounds and encases the prostate. My cancer spread into my left seminal vesicle (cells, no nodule or tumor, fortunately). Even during the surgery, the urologist can't clearly see "where" the tumor has spread once it breaks through the capsule...he is trying to take as much as he can. That is why they routinely remove both seminal vesicles, and sometimes the local lymph nodes.
Because I had EPE, I was one of the unlucky 10% that had "Surgical Margins", meaning the pathologist identified cancer tissue right up to the edge of what he was given, meaning that some cancer was left in my body. It is not a simple surgery like a skin cancer, where the urologist can rush a sample (the whole prostate) to pathology to have a frozen section done to see if there are those margins. With skin cancer, they phone the surgeon and say "take more surrounding tissue out." You can't do that with a prostatectomy. The urologist just hopes he got all of the cancer.
So, all of that and more can be part of your post-RP surgical pathology report. My urologist was initially thrilled with my biopsy saying "we caught the cancer early." I only had <10% of cells that were graded "4". I was almost a Gleason 3 + 3 =6. When he got my surgical pathology report, my urologist was quite solemn...humbled...saying: "It seems that your cancer is worse and more aggressive than I thought."
Had I done Active Surveillance for two years, my PSA would have likely soared and the cancer would have spread more aggressively into both seminal vesicles and beyond...exactly why my urologist never does Active Surveillance. I would be in a much worse situation. So...bottom line:
I personally recommend having the radical prostatectomy because you don't really know for sure how bad your cancer really is based on just the biopsy. BTW - what percentage of grade "4" cells did you have? Again, I had the lowest you can have at <10%, but my cancer was far worse than the Gleason 3 + 4 = 7 with the <10% would have indicated. Good luck to you.

@johnnyz I'll just reply on sexual function and incontinence prep before treatment.

First, everyone is different. The surgeon may have to take more nerves to get good margins, depending on your test results/pathology. Even with perfect nerve sparing, your response to a perfect treatment will be different from everyone else.

I had nerve sparing surgery 3 1/2 months ago. My continence and sexual function are ahead of schedule. I am feeling very fortunate. It's still a lot to deal with, but I know it could be even more challenging, so I'm grateful to make the progress I have so far. Still a ways to go.

Here is what I'd suggest:

• Sign up for Pelvic Floor therapist before treatment. Bladder retraining, advancing your kegel program and giving you additional exercises at the right time specifically for you. This is so helpful!

My incontinence isn't as bad as some others at this point in time post surgery, but I can't tell you how helpful it is to have a trained specialist helping you progress. I was a doubter because I'm not that bad. But, yes, it's a huge help.

• Get started on kegels Start doing kegels NOW before treatment. Don't wait. I use the Easy Kegel app, paid the $3 (worth it) and set up alarms and my own schedule. Make sure to learn how to trigger the right muscle! (that's where the pelvic floor therapist can help as well They can tell you if you are doing it right)

• Sign up for a Sexual Function therapist before surgery so that you can prep and then get in to see the specialist before too long after surgery.

For sexual function,

• Start a PDE5 inhibitor before treatment. I started taking Tadalafil prior to surgery. Many centers actually have you do this. My surgeon didn't prescribe it (the research does not say this has benefit), but I pushed ahead and asked my primary care doc to write me a prescription and he did that in a heartbeat. Super glad I did this.

I'll say this. I figured out how to overcome some initial muscle ache side effects from Tadalifil and have had no problems since (switched to taking it in the morning rather than at night). I also had a glorious stretch of being as functional as a teenage guy again. So, have some big fun before the big day.

•Second. I got a penis pump to see how to use it. It's so much easier to learn when you are fully functional. I ordered a Vacurect (not cheap, but easy to use, FDA approved and designed by a former PCa patient). After surgery and the catheter is removed, it's time to do pump therapy. (lots of posts out there on this and other options on pumps). You do this because post treatment, you no longer get erections. The pump action helps keep tissue from turning into scar tissue. It's a use it or lose it situation. Until you can get erections again, you need something to help.

• Restorex post surgery: I was a doubter. I never thought I would do this, even after all my pre-surgery homework. My sexual function doctor said I was a good candidate for a Restorex trial. It's stupid expensive, but I got the unit for free as part of being in the trial. I've been doing that for almost two months now. It's basically a penis stretcher. Why would you do this to yourself? Well, surgery often leads to a much shorter penis that can affect more than just your ego.

I was a doubter, but I can say this 100 percent. It works. I tried the pump post Restorex treatment and there was a big difference. I am actually bigger now, which was not my actual goal. It took a couple of months of doing the stretch ( 30 minutes a day) for any big noticeable change, but all of sudden, there it is.

Also, Before surgery, while you're at it, do some flaccid and erect measurements to know what you are prior to surgery. It's kind of like how big the fish you caught. You want an accurate number, not the fish story.

Good luck with your decision making. The good news is that there are so many treatment options and it is so much better to be on the other side of treatment. Still recovering, but feeling much better.

@n227rv
I was not willing to accept the lifestyle changes you point out that surgery would likely present. My surgeon advised that I would be 'dry' in a year and that impotence would be tbd depending on nerve sparing surgery once the procedure was underway. The prospect of my remaining life (64 years old) with incontinence and impotence were big factors for my wife and I. I listened carefully and sought out multiple opinions to get myself comfortable with the decision. No regrets at all. Being alive and living are two different things in my view. At this point, 7 months out, quality of life factors re: incontinence and impotence are not a problem. I have cribriform and one procedure vs the other were equal and I opted for an aggressive radiation and drug regimen. Every patient finds their way forward and the right choice is the one you are comfortable with. Go easy and best of luck. You'll make the choice that is right for you.

Sorry to hear of your cancer, but you are in a good place here on this blog to receive our collective advice and recommendations ("qualified" of course) on what our experiences were. To that end, I haven't written this in several months, but here is what I discovered/realized after I went with my urologist's recommendation for the DaVinci single-incision, robotic assisted radical prostatectomy:
The Gleason score is just the "tip of the iceberg" called prostate cancer. I too was a Gleason 3 + 4 = 7 with perineural invasion. That is "all" that can usually be accurately observed with biopsy slides. When I asked about Active Surveillance and radiation, my urologist was adamant saying "I never do Active Surveillance...it just gives your cancer two or so years to slowly grow and get worse...it will NOT go away...YOU HAVE CANCER." As for radiation, he said "you never want to do radiation "before" surgery because radiation fries your prostate, turning it into a little walnut size chunk of concrete that is nearly impossible to remove surgically thereafter." So...he flatly told me: "I am taking your prostate." It was a very firm statement. So...
I AM GLAD I HAD THE SURGERY. The hidden, unseen, larger part of that "iceberg" is all of the other pathology - often ominous - that a biopsy can't tell you. I had Extraprostatic Extension ("EPE") where the tumor breaks through the membranous capsule that surrounds and encases the prostate. My cancer spread into my left seminal vesicle (cells, no nodule or tumor, fortunately). Even during the surgery, the urologist can't clearly see "where" the tumor has spread once it breaks through the capsule...he is trying to take as much as he can. That is why they routinely remove both seminal vesicles, and sometimes the local lymph nodes.
Because I had EPE, I was one of the unlucky 10% that had "Surgical Margins", meaning the pathologist identified cancer tissue right up to the edge of what he was given, meaning that some cancer was left in my body. It is not a simple surgery like a skin cancer, where the urologist can rush a sample (the whole prostate) to pathology to have a frozen section done to see if there are those margins. With skin cancer, they phone the surgeon and say "take more surrounding tissue out." You can't do that with a prostatectomy. The urologist just hopes he got all of the cancer.
So, all of that and more can be part of your post-RP surgical pathology report. My urologist was initially thrilled with my biopsy saying "we caught the cancer early." I only had <10% of cells that were graded "4". I was almost a Gleason 3 + 3 =6. When he got my surgical pathology report, my urologist was quite solemn...humbled...saying: "It seems that your cancer is worse and more aggressive than I thought."
Had I done Active Surveillance for two years, my PSA would have likely soared and the cancer would have spread more aggressively into both seminal vesicles and beyond...exactly why my urologist never does Active Surveillance. I would be in a much worse situation. So...bottom line:
I personally recommend having the radical prostatectomy because you don't really know for sure how bad your cancer really is based on just the biopsy. BTW - what percentage of grade "4" cells did you have? Again, I had the lowest you can have at <10%, but my cancer was far worse than the Gleason 3 + 4 = 7 with the <10% would have indicated. Good luck to you.

@pmclarksr -- I saw your question to @heavyphil and thought I'd weigh in as well since I had bilateral NS RALP at Mayo Phoenix in late 06/2024. I'm 70, 5'11" 187 lbs reasonably fit (not excessively so). Recovery from surgery has been excellent. The week of the catheter was unpleasant, but pretty much as described.
Pain after surgery never exceeded 2 on a scale of 10, although I strictly followed surgeons advice to take OTC pain meds (Tylenol and ibuprophen). Once the catheter came out I had Depends and pads ready, but never had any incontinence except a few accidents as things do feel different. I stopped using the Depends after a day or two, and stopped bothering with pads by about day 4 post catheter. I do still sleep with a pad under the sheet, but haven't had 1 accident during sleep. As I said things do feel a bit different, but every week I feel more confident. No leakage lifting weights at the gym, but if I try to fart I will have some leakage (which I attribute to relaxing the muscles to fart basicly allows the leakage). I did do kegals about a month before surgery and resumed them after surgery when allowed. I have no idea if they helped, although I would guess they probably did. Now on to sexual function. I don't have normal sexual function, and I think that'll take longer to recover (if it does). I am taking Viagra nightly as part of penile rehab to help blood flow. I started trying to have intercourse about 4 weeks after the catheter came out. When I try to have intercourse, I do get a response but it's far from satisfactory. I have seen improvement, but it's too early to know how much sexual function I'll recover. At this point I'm getting maybe 65% firmness (as compared to before surgery) and just barely adequate to allow penetration. My wife is very supportive and patient with me, and a major factor in the limited success I've had so far. I have had 3 climaxes during intercourse, and of course they're dry climaxes and frankly less satisfying than before surgery. But I'm encouraged I was able to climax at all. To be fair, before surgery I had needed Viagra so I wasn't starting from a pristine state. Progress is slow but so far I am still making progress. If I don't recover my sexual function to a satisfactory level, then there's a range of treatments I've yet to explore. As far as everything else (appetite, sleeping, general feeling of health), overall I feel great; just like before surgery. My wife and I are hikers and spend a lot of time together, and other than my reduced sexual performance, we can still enjoy ALL our other activities. For me this has been a big plus. On a positive note, without the prostate my urine flow is great; like I'm 20 years younger. After surgery, the pathology report on the prostate found both Cribiform and IDC in the prostate, which is bad. When I read that I was pretty happy I had the surgery . The margins were clean and indications are they got it all, but time will tell. At this point (almost 9 weeks), I'm pretty happy with my decision to have the surgery but again, time will tell. Of course, every case is different and everybody responds differently to treatments, so I have no idea what's best for anyone else. I wish you all the best in figuring out how you should proceed. If there's anything I didn't cover that you'd like more information about, just ask. I have no reservations sharing anything about my experience.

@fritzo You have a good story... and you proactively did what you needed prior to and post surgery. That is much of the same mindset as myself. I am leaning towards the robot surgery and we have a well know hospital 45 mins. away that is known as being one of the best. That helps. I am 68 and do plan on spending lots of time before surgery enjoying frequent intimate time. Thanks also for the tips on PDE5 inhibitors, vacuum pump, therapist treatments...Basically, I will do everything possible to minimize the impacts while hoping to become cancer free which the doctor stated that I should be a "cured" patient following treatment...
I was not aware of the Da Vinci one incision vs the typical 5. How did that go for you?

@watsohj
You should be having a PSMA PET scan. The MRI may not find anything, but somethings creating that PSA.

Frequently the MRI does not show cancer, which is very aggressive inside the prostate. The only way to find it is to do a biopsy that covers a lot of the area left of the prostate, Or do a prostatectomy. I wouldn’t do anything until the PET scan is done.

Hopefully you’re not in Canada and can get this done since your PSA is so high. It is guaranteed to find whatever’s causing this problem..

It is possible that during focal therapy they only removed a small portion of your prostate. In that case rising to 4.2 may be just normal for your age. I’d want the pet scan though to prove it is normal.

@jonathanack Thanks for your story and glad to hear your success. Did you need to have ADT at any time? And if yes, when and for how long?

@retireditguy Hey, It's John here and your story sounds like mine and what I would hope for but do know how different everyone's case is. I am about 2-3 months out from treatment. Surgeon recommended robotic surgery which I am leaning to. I still have to meet for a consult with the robotics surgeon, and radiologist. Because I now know the PC is contained in the capsule, and there is evidence of Cribriform Architecture, I am wanting to get it out. Of course I hope for nerve sparing etc. I need to hear what the robotics surgeon and radiologist say the numbers are for chance for containment, good margins etc. I am 68, have recently had an MRI and then fusion biopsy with results of 7/15 cores positive, and 3+4 with pattern 4 = 6-10% Low. I do have two lesions; 1.2 and 1.9cm. So, my journey begins...