Thoughts about AS Recommendation for Favorable Intermediate Prostate Cancer Patients

My whole journey is outlined in the "My Story" post but I thought I'd start a new thread about this subject specifically.

It's been 2 months since my prostatectomy and I've had time to think about things. I think my experience could be a cautionary tale for those men told to try AS with a Gleason 3 + 4 diagnosis. Granted my "4" was predicted by the biopsy to be only 5% of one core but I still think my situation was not handled properly.

To recap, one urologist back in March 2024 recommended immediate surgery without having a genetic test and the other strongly recommended AS. My problem is the one who recommended AS totally discounted my family history of prostate cancer (father and grandfather died of it plus mother and her sister died of breast cancer) and did not recommend a genetic test. I just don't understand his assertion about the lack of importance of family history.

It was the urologist I originally saw who doesn't do prostatectomies who said I HAD to have a Decipher genetic test to continue on AS. He told me this almost 6 months after I was seen by the urologist who advocated for AS. What if I never had a follow-up with this particular doctor? I would still be doing AS at the recommendation of the other urologist. The MRI, DRE, and PSA test I had as part of my AS showed no movement in the cancer but the Decipher test came back at .61 - high risk. The urologist who recommended AS then quickly changed his tune saying to have surgery ASAP and scared the crap out of me with his assessment of my Decipher score. If it was all-important, why did he not insist on this in March when he told me to do AS?

It turns out my post-surgery pathology came back with a higher percentage of Gleason 4 (though I'm still 3 + 4) AND, most concerningly, two EPEs (focal). I'm now stage 3 prostate cancer. If I had had the Decipher test back in March, I'm almost certain that I would not have been told to do AS. Could those intervening months be the reason for two EPEs? We'll never know but I feel like I was robbed of an important and vital factor in decision making for AS.

It's particularly concerning for my situation of not being able to have any radiation.

I'm not saying AS is not a viable option for 3 + 4 patients but it would seem that a genetic test should be absolutely mandatory for this recommendation.

Jason, why can't you have radiation? You can, and you may need it depending on what your PSA does over the next months.

That being said, when I first came into this forum 10 years ago, AS was talked about a lot, and some of the thinking has evolved. At that time--this was before Decipher was a thing--the basic idea was no AS if there is ANY G4 on biopsy, and that AS demanded a detailed biopsy within 6 months of starting AS.

What your experience suggests is that there are still some doctors who don't really grasp the detailed protocols that Johns Hopkins and others have put out about how to manage AS.

The good news is--PC is slow growing generally, so your delay probably didn't really cause much of an issue. I'm one who was diagnosed at G6, in 3 of 12 cores, and 3 months later my post surgery pathology had me 3+4 with multiple hot spots in all 4 quadrants of the gland. I believe those were already there, just didn't get stabbed in the biopsy. I further believe that if I had gone AS, my G7 would have been found on the next high level biopsy, and I would have ended up getting treatment anyway.

Now you're in the recovery and waiting for that post surgical PSA at 3 months. Let's hope for a "<" sign on your report. Make sure you get the post-prostatectomy test (ultrasensitive).

My take is that someone may have a Favorable Intermediate biopsy score (3+4), but they'd be going on AS not certain whether they actually have Favorable Intermediate cancer. The amounts of tissue sampled in a biopsy are too small to reliably predict the percentage of grade 4 cancer throughout the whole prostate, which is why some 3+4 men who choose surgery are upgraded to 4+3 afterwards (and a few will have a path report that includes some grade 5 cancer, putting them in a higher-risk category).

Personally, I wouldn't opt for AS with a (3+4) biopsy, and definitely not without a low-risk Decipher result, excellent MRI findings, no PNI, no father or brother with PCa, only a couple of positive cores only one of which is G7, a pretty low PSA, and a personality that is OK with AS. But that's me (It's going to take some time to determine whether PSMA/PET scans will become a routine part of the PCa workup.)

Men who are G6 (3+3) have a good chance of never progressing from indolent cancer and therefore never needing treatment. That's very attractive! However, if you are G7, there is a decent chance you are just postponing treatment. That, too, can be OK, unless you fall through the AS net and are told to leave the program and treat after the chances for a cure are much reduced.

Finally, take note that not all AS programs are equivalent. The strictest ones (like JH's) are the safest. I haven't kept up with AS programs, but unless things have changed, the better programs will tell you to seek treatment if your PSA rises above 10 (that's probably 5 if you're taking finasteride or dutasteride for BPH symptoms). Your may not even qualify for the strictest programs with your particular G7 status!

Djin

Thanks for posting that study. My pathology said "Very focal cribriform architecture is present". I'm not sure if the "very focal" part would make my chances better of not having a BCR. As stated above, I can't have radiation so would most likely not want to do any further treatment even such as hormones until such time as it shows. I again feel like my situation was not handled correctly and wonder if the cribriform would have been there if I had the surgery six months earlier.