Gleason7(3+4) - treatment options recommendation

@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.

@johnnyz
While 7 of 15 cores is good to know it’s even more important to know what the Gleason Scores were on those seven cores. Were they all 3+3? Were some of them 3+4 or 4+3. Or any of them 4+4 or 4+5.

Any of those group of scores could mean you need different treatment. Was the cribriform Large or small? My brother had small cribriform And just had five sessions of SBRT radiation and he’s doing fine three years later. If it’s large cribriform But you only had one 3+4 and it was only 10% of four then you could actually hold off and do active surveillance. I know a guy who’s gone well over a year with large cribriform But only a 3+4 and many doctors have told them there’s no urgency and he’s just stayed on active surveillance.

If it’s a 4+5 or 4+4 then you want to get a PSMA PET scan to see if there’s any spread outside the prostate. In that case, surgery is not an option usually you want to do radiation.

How high was your PSA at diagnosis? The higher it is the more urgent treatment is.

I need a lot more information to really Assist you.

Are you a patient that could have focal therapy? A lot of that is based on how much it is spread and how aggressive it is.

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

@johnnyz
I am 64 with 6 tumors (2 are gleason 7 with cribriform / 4 are gleason 6). My urologist/surgeon is Joseph Wagner (early DaVinci surgeon with 4k successful patient outcomes). Dr. Wagner ordered a decipher test to ascertain where I was on that scale: .72 (high). Dr. Wagner advised that I would be 'dry' in a year and that intimacy was tbd depending if nerves were impacted as the surgery commenced. I had a very good shot at nerve sparing - but not a guarantee. Dr. Wagner advised that either radiation or surgery were equipoise in efficacy (re: cribriform and high decipher) and referred me to his colleague Dr. David Byun (radiologist MSK/Weil trained - young, brilliant, candid) for his perspective. These two doctors are Exceptionally Supportive and were very clear about my issue and what to expect. I had second opinions provided by Smilow, MSK, and a conversation with Tufts oncology. All opinions were the same as Dr. Wagner. I also listened carefully to Dr. Mark Scholz and watched all of his video presentations/interviews. I found this forum (Mayo) and the insight from many on here was terrific (Jeff Marci and Heavy Phil to name two that have been exceptional!). I opted for SBRT and 120 days of orgovyx and finished the initial treatment in December of '25 and the orgovyx in March of '26. I stayed (and remain) very active throughout - exercise was a big help (hiking, skiing, out with my dogs everyday). Side effects: fatigue, low/no libido, minor discomfort when I pee - all resolved by and large by June. Now: No meaningful side effects except some occasional fatigue. Functioning as close to normal as one could hope. For me: the risk of my remaining life dealing with incontinence or intimacy restrictions from surgery was not going to work. Being alive and living are two different things in my view. There is no wrong decision. The only right decision is the one you are most comfortable making. We are lucky to have prostate cancer and not the issues kids and others have with far more dire forms. Go Easy and Good luck. This works out and you will be fine.

@soli
What my intent was be careful making decisions on your health care from post from others on citing research, seminar, podcast and what to do or not do.

We are not medical professionals but even if we were we do not know a persons full medical or mental health history nor have we examined the individual if we were.

My heart failure doctor just put me on Jardiance. I said why are you recommending that isn't that a drug for diabetes?

He answer that is the original intent (diabetes) but research is showing that it can help remodel the heart. So it comes down to having and experienced, caring, and up to date medical provider. I did research on the drugs and he was right on.

I post my direct experience with a drug, or supplement and why my doctor put me on it with caveat we are not all the same and what may work for me will not for you and vice versa that is for you and your doctors to decide not what I heard on a podcast or seminar as being appropriate for another on MCC.

What we should encourage is talk to your doctors about this research you have been told about and to check with your doctors if applicable and helpful to you. But, not I heard this on a seminar, or podcast and you should to or not do something regarding our mental or physical health.

Recently I mentioned taking Jardiance for heart failure. I posted my Heart Failure specialist at Mayo (who has been treating me for over 20 years) explained the research and that he thought with my specific condition and status of heart failure it could possibly help.

I think we are actually saying much the same thing. I completely agree that we should be careful about taking another person’s experience, or something we hear in a podcast or seminar, and turning it into a recommendation for ourselves. Your Jardiance example is a good illustration: your doctor’s recommendation was based on research, your specific heart condition, and his knowledge of your medical history—not simply because someone said Jardiance was helpful.

My only point is that individualized treatment should also be guided by evidence-based standards such as NCCN, AUA/ASTRO/SUO, EAU, etc. Those guidelines don’t necessarily dictate one treatment for everyone. Rather, they help establish which options are supported by the evidence for people with particular disease characteristics. Then the doctor and patient can determine which of those options is most appropriate based on the individual’s health, tumor characteristics, risks, and personal priorities.

So I agree that a podcast, seminar, or another patient’s experience should generally be a reason to ask your doctor a question, not a reason to tell another patient what they should or shouldn’t do. At the same time, I think it is perfectly appropriate—and often very helpful—for patients to educate themselves about the research and guidelines so they can have better-informed discussions with their medical team.

@jc76

I would also like add that I think it is important for patients to educate themselves and understand the research and applicable clinical guidelines. That doesn’t mean practicing medicine on ourselves or telling others what treatment they should have. It means being informed enough to have a meaningful discussion with our doctors and, when appropriate, to ask questions or seek a second opinion.

I experienced this myself. When my biopsy came back as Gleason 3+4, I went to a different medical group and urologist for a second pathology review, partly because I had read Patrick Walsh’s book, which emphasized the importance of confirming a prostate biopsy diagnosis. Their pathologist confirmed the 3+4 diagnosis, but the urologist recommended active surveillance.

I was surprised by that recommendation because my PSA was relatively high, placing me in the unfavorable-intermediate-risk category based on the information available at the time. My genomic test was also still pending. From what I had learned by reading the NCCN and AUA guidelines, active surveillance did not appear to be the usual guideline-supported approach for someone with my risk characteristics.

That experience reinforced for me why patient education matters. I didn’t decide on my treatment based on a book, a podcast, or another patient’s experience. Instead, what I learned prompted me to question the recommendation, look more closely at the guidelines, and seek additional medical opinions which confirmed the need for definitive treatment for my condition. Ultimately, the purpose of doing our own research isn’t to replace our doctors—it is to become informed partners in the decision-making process.

So I agree completely that we shouldn’t tell another patient, “I heard this at a seminar, therefore you should do it.” But I also think we should encourage patients to learn, ask questions, understand the evidence and guidelines, and seek a second opinion when something doesn’t seem to fit their particular circumstances.

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.

@soli
Completely agree with your post. I too was diagnosed with PC. I had not idea of what to do. I was not on MCC at that time.

Mayo diagnosed me and gave the treatment options. My Mayo primary care doctor (who was doing the PSA tests and referred me to urology) wanted me to get a second opinion.

Yes even though he was a Mayo doctor and the urologist was Mayo he said getting a second opinion will help you and I make the right decisions for you.

So I went to UFHPTI for second opinion. What I got was same diagnosis but a different treatment plan. So I discussed this with my PCP and we both agreed that having proton radiation versus photon was best for me.

After I had all that information I started doing research on photon and proton radiation and found that the recommendation my doctor and I were making was matching what the research I was doing on major medical institutions.

Then I became a what about this or that. For some doctors they don't like that but for mine they said sounds like you are doing research and glad to answer your questions.

I agree with your post. Become educated in your physical and mental health and let it guide you of what to discuss with your medical doctors. And I am a strong proponent of getting second opinions.

What I started doing and still do now is use A.I. I use Microsoft Co-Pilot. What I like about Co-pilot is they will give you the latest research on a top and then list where they got the research from and list their web sites.

I was surprised one day when one of the research mentioned was Mayo Community Connect (MCC) on comments and what individuals were experiencing on treatments side affects.

@rlpostrp thanks for sharing your experience.

@johnnyz I should have included that my Gleason score was 3+3 last year, and after this biopsy it has shifted to 3+4=7 and intermediate unsatisfactory