Was on active surveillance, now gleason 3+4: Any advice?

My best advice is not to panic over your recent turn of events - you will be fine. Take your time assessing the various treatment options and talk to as many people as possible, then make the decision that's right for you considering your personal circumstances. I've discovered that almost everyone's situation, lifestyle, marital status, etc. are different, and that there's no single treatment option that's best for all, even though some people will try to convince you otherwise.

I was diagnosed at age 71 with a PSA of 5.65, Gleason score of 3+4, and a tumor confined to one quadrant of my prostate. There was a reasonable case for active surveillance, but ultimately I chose surgery because I wanted it gone, and was willing to live with the side effects. Thirty months later I've had a biochemical recurrence, and am now again trying to decide what to do.

I read a recent (2023) study in the New England Journal of Medicine that concluded mortality was essentially the same for men with non-aggressive prostate cancer, regardless of the treatment option they selected (https://www.nejm.org/doi/full/10.1056/NEJMoa2214122). I found this very reassuring, and I'm now seriously considering adopting an active surveillance strategy, and simply enjoying the rest of my life without further treatment.

I wish you the very best of luck in wading through all the information, and sorting out what you want to do. I found the process somewhat overwhelming, and the doctors not terribly helpful as they all seemed to have their own personal bias (urologist recommended surveillance, radiation oncologist radiation, and surgeon surgery). But, you will get through it and will choose what's right for you.

As a widow I read these stories and think of the journey I have been on since February 2024. My husband had a gleason score of 8 and was told it wasnt a death sentence. He chose to take the hormone therapy and had the elegard shots. nubeca and xtande meds, He let the urologist be in charge of his prostate cancer. He saw a oncologist but he said he wasnt in charge so was not active in my husbands treatment. I think this was a big mistake on our part. The cancer spread to bones liver and kidneys. He died in November. Oh he was 88 so they didnt remove the prostate. Oh, his PSA was 6 dropping to less than 0. Looking back I think he should have made the oncologist be in charge.

I was 69 when mine was discovered by pure chance. PSA 21,
gleason 3+4 stage 3, they discovered 2 growths. They started the treatment straight away. I went down the route of radiotherapy, treatment was successful with after last session my PSA had dropped to 0.01, just had my first 6months PSA check , they said if reading was ok they would not contact me, now bit concerned they have set up phone call appointment for this coming Wednesday, trying to stay positive not easy

I am really sorry to hear of this. I am fully on board with what my urologist said when I asked about my options when I was first diagnosed as a Gleason 3+4=7, which was/is: "You HAVE cancer...there is no point watching and waiting for two years of Active Surveillance...your cancer is only going to get worse." That is exactly what has happened to you, quite unfortunately. Your doctor could have removed your likely "capsule-contained" prostate without any additional pathology. Now that your cancer has progressed to a Gleason 3+4=7, you could...you "will"...have more pathology. I just wrote this in another reply, but the Gleason Score is just "the tip of the iceberg". My urologist was overly confident, even with my Gleason 3+4=7, that "we caught it early." Well, this is where the big, ugly part of the iceberg lurking beneath the water shows itself. Once my prostate was removed it revealed a much more advanced pathology and degree of cancer. My urologist was quiet and solemn saying "your cancer is more advance and aggressive than I thought." In quick succession, without offering the detail (you can quickly Google it), I also had Extraprostatic Extension ("EPE"), Surgical margins, Cribriform Glands, and (left) Seminal Vesicle invasion, all of which took me from a low-Moderate Risk Gleason 3+4=7 that should have only been a T1 or T2 cancer, to a class/category called pT3b which is much worse...the definitive thing being that there was seminal vesicle invasion. Even though my urologist removed both seminal vesicles and both vas deferens with the prostate, the fact that the cancer entered my left seminal vesicle (no nodule or tumor though), took me to that pT3b category which means that I have a 25%-50% likelihood of the cancer coming back "within" five years. The "lesson" learned is that I would not have known any of this and how bad my cancer is, if I had just relied on my Gleason Score and insisted on Active Surveillance. All of that extra pathology was seen with the prostate tissue examined in detail microscopically, after it was removed. What I am saying, is that even with a Gleason 3+3=6, you may still have more advanced cancer pathology happening than the Gleason Score might suggest. And...
As I offered in my other reply to a post here: make sure you have your biopsied tissue sent to Veracyte Labs in San Diego, CA for their proprietary test called the Decipher Test. It is a test for 22 prostate-cancer-specific genes that will tell you how your cancer story will unfold. It is a test that yields a score from 0.1 to 1.0. You want your score to be as low as possible, meaning you have fewer cancer genes or fewer of the worst cancer genes. The good news is, like with me having a Decipher Test score of 0.50 - "dead middle" of the range, my 5-year, 10-year, and 15-year risk of death (shorter longevity) is still only in the 4% - 7% range, meaning I have a 93% - 96% chance of still being alive at 5-, 10-, and 15-years in my post-prostatectomy cancer journey. I had whatever cancer genes I have, but they aren't the bad ones.
My bottom line suggestion: I would not do Active Surveillance any further. I'd have the prostatectomy while there is a much lesser likelihood of those things mentioned above that will make things much more difficult: EPE, surgical margins, Cribriform glands, seminal vesicle invasion, etc. This is just "my opinion." I am clinically trained, having spent 40 years as a Director of Clinical and Anatomical Pathology services in hospital and commercial labs, so I have a little more knowledge or perspective, but again...do what your physician suggests, get a second opinion if you feel the need to, and do what you feel is best for you. Good luck!
Good luck to you.

@htc929
If Gleason Score or 3+3=6 (per my Mayo urologist) a lot of urologist would recommend active surveillance. But now you have a Gleason score of 7. I assume you had another biopsy done. A 3+4=7 indicates cancer by the comparison of cells that Gleason Score does (again per my Mayo urologist). Many urologist like mine recommended treatments and I was referred to R/O. When I had my first biopsy mine was 3+4=7 and rated as intermediate risk.

My Mayo R/O recommended photon radiation with hormone treatments. Mayo R/O stated would recommend doing a Decipher test and bone scan. Decipher came back as low risk not the intermediate risk. That changed my treatment plan to just radiation no hormone.

My bone scan was negative and another test done called PSMA came back negative as well. I would recommend talking to the urologist and mentioned the Decipher test and PSMA to get a better more specific diagnosis of risk of his cancer. With this more accurate and applicable recommendations of treatments would be possible.

If your urologist just wants to continue with active surveillance if me, and must speaking for me, not as medical advice, I would get a second opinion. I got a second opinion per my PCP recommendation and both came back with (Mayo R/O, UHPFIT R/O) recommended to me radiation with no hormone treatment.

@abinoone
Hi and thanks for posting that link which is very interesting. I also had RP relatively recently. Would hope to avoid futher treatment in addition if at all possible to ensure some q.o.l. Let me know what you decide. Good luck!

2 1/2 weeks after Hemi Gland Tulsa Pro at Mayo and all is going well so far. Catheder was horrible for 7 days but got through that and now doing well. Had two days of spraying while urinating, and urgency to go, but that ended about 24-36 hours after catheter removal. Things are back to normal or even better now. I have a stronger stream, and have had morning wood which is encouraging. Very little pain at all other then the catheder. Getting better by the day. Next stop is PSA test in March and MRI in the summer. Praying all goes well. Another nice thing is insurance covered 100% since my max out of pocket was met. I paid $0. I’ll keep all updated. Thanks for all the prayers.

@rlpostrp thanks for sharing this difficult journey.

May I please ask you some questions:

Did cribriform or intraductal pattern 4 (versus less concerning ill fused) show up on your biopsy prior to deciding to go for the RARP? What percentage of pattern 4 vs 3 did the lab assess? Did they offer you a PSMA Pet Scan early on to help decide about AS vs treatment? Any thought early on about focal therapy?
Thanks!

Hello chocchip:
My responses to your questions in random order, more time-sequenced to my experience, as follows:
1) The biopsy yielded just 6-10% cells classified as "4". My doctor understood the necessity of me being classified a Gleason 3+4=7 because of those 6-10% cells that were "4", but he also said that I was very close to being just a 3+3=6. It was this low number of "4" cells that prompted him to confidently say that "we caught it early."
2) Yes...I did have a PET scan with the Gallium-68 radioactive tracer. Very simple. You're injected with the Gallium, and an hour later you are taken to the scan room, and just lay there comfortably while your body is slowly, incrementally moved through the open scanner from neck/shoulders, down to your knees. My scan revealed all cancer being confined to the prostate. There was no radioactive uptake in my lymph nodes or bones.
3) Cribriform glands as the tissue is termed, only shows up by serial-sectioning of your prostate and tumor. It is not discernible on biopsy. I haven't read much on Cribriform Glands other than the tissue on the microscope slide has the appearance of "Swiss cheese" with random holes here and there. Apparently this is a more ominous classifier of your disease.
4) My biopsy was mid-December 2024. I had my biopsy summary conference with my doctor the second week of January 2025. I asked about my options to include Active Surveillance. My urologist was quite adamant and definitive about Active Surveillance, saying: "You HAVE prostate cancer...it is not going away and it won't heal itself, so there is no point giving it two years to get worse under Active Surveillance, so...I am 'taking' your prostate" (meaning I had no choice...he was going to surgically remove my prostate). I had asked about radiation instead of surgery, or surgery "after" radiation if necessary. My urologist said he never does radiation first because the radiation turns your prostate into a walnut sized scarred chuck of concrete, making it extremely difficult to remove if that is deemed necessary after radiation. He said he always does DaVinci Robotic-assisted Radical Prostatectomy, and only if it is required, does he have the patient due a course of radiation thereafter.
5) My surgery was originally scheduled for the first week of March, but I was closing out my divorce and had to pack my house of all belongings to make it "sale ready." I couldn't do that while recovering post-op, so I delayed my surgery one month to mid-April just two weeks after I moved into my new home with my divorce final in mid-March. It naturally wasn't a great period of time in my life.
6) The post-surgical pathology report on the entirety of my prostate and seminal vesicles, was what revealed everything else, and solemnly humbled my urologist a bit. He said: "it seems you cancer is more advanced and aggressive than the biopsy and Gleason score suggested." Unlike many other men who have their Gleason scores adjusted upward post-surgery based on the surgical pathology report, mine remained a 3+4=7, but...the surgical pathology revealed all of the Extraprostatic Extension (EPE), Surgical Margins, Cribriform Glands, and left Seminal Vesicle partial invasion (with no tumor or nodule...just cancer cells...in the left seminal vesicle).
I hope this helps. Good luck.

Thanks and very helpful too. Hoping this ends well! Sorry about your divorce in the midst of this.

I disagree that cribriform pattern 4 subtype however needs the full prostate to be removed to ascertain if this is present. It can often be determined if it is present from the biopsy. If it is, prostate removal is more justified than some of the less ominous forms of pattern 4’subtypes.