Confused Grade 1 or Grade 2?

This may be the key to why active surveillance makes sense at this point.

“ Gleason score 3 + 4 = 7 ( < 5% grade 4)”

Well, you do have a lot of 3+3 The only 3+4 has a very low percentage of four. Low enough that active surveillance might make sense. And then it’s downgraded to no 4’s.

The thing is nine of your cores had at least a 3+3 And that is above the number of cores recommended to start treatment rather than doing active surveillance.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.

You can speak to your doctor about those options.

It must be very confusing. Can you ask for third opinion ? It is so very important that you know if perineural invasion is present and of course if 3+4 is really there. Do you have PSMA scan scheduled ? If not, I would ask for it as well as for Decipher test done.

My follow-up appointment at Penn was today. They would not recommend PSMA stating the low grade present. I'll check with Sloan Kettering. Penn however will do some sort of Decipher testing (which they are doing research on right now) and will call me back with details. But as @jeffmarc said, Penn is recommending treatment because a lot of cores were positive and one of their interpretation was 3+4. They said there is a good chance I will need treatment in 2 to 5 years if I go on AS. I am meeting with a Radiation Oncologist as well as a Uro-Surgeon at Sloan Kettering. I'll see if I can have John Hopkins read the slides as I hear they have some world renowned experts. But even if John Hopkins comes back saying everything is 3+3, I am still leaning towards surgery. I was told since my prostate is still normal size, they can pull the bladder up during surgery which will greatly improve incontinence. They will also do nerve sparing surgery. I don't know! This came out of nowhere. Absolutely zero symptoms even now!

Regarding your slightly different Gleason scores from two reputable institutions.

Remember that a Gleason score is just one experienced pathologist’s educated opinion of what is seen under a microscope in the biopsied tissues. A 2nd (or 3rd) opinion is exactly that as well - just another experienced pathologist’s educated opinion of what is seen in the tissues under a microscope - and carries no more weight than the 1st (or 3rd) one.

Much of the interpretation of images, scans, and slides is often as much an art as it is a science and dependent on the skill and experience of whoever is doing the reading.

There’s no way to know which one is “right.” So, there really is no value in a 3rd opinion. (Now, if one said a Gleason 6 and the other said a Gleason 10, that would be different. But, a 3rd opinion on a 3+3 and a 3+4 adds no value.)

I had a similar experience; Here’s what I did —> My Gleason score was a 3+4=7; We sent it out for a 2nd opinion, but I made a personal commitment:
> if the 2nd opinion came back a lower 6(3+3), I would still get treated to the higher 7(3+4).
> if the 2nd opinion came back the same 7(3+4), I would get treated to the common 7(3+4).
> if the 2nd opinion came back a higher 7(4+3), I would get treated to the higher 7(4+3).
As it turned out, the 2nd opinion came back a higher 7(4+3). So, that’s what I got treated to.
It was an easy call…. (I chose proton beam + ADT.)

Nerve sparing is no guarantee of success, unfortunately. As @jeffmarc pointed out, you have a very small amount of G3+4 so a less invasive treatment may be preferable.
Since you mention Sloan, the NYC campus performs MRI guided HIFU treatment. My friend is currently scheduled to have this done. I forgot the Dr’s name but he is Arabic. You can probably find him on their website. Best,
Phil

I understand about them not recommending PSMA stating the low grade present. That makes sense if you’re planning for radiation. But, if I was choosing surgery - and there’s rarely a medically necessary reason to do surgery - I would push hard for a PSMA PET scan,

@pv001 That is a tough decision. I have seen and read that erectile dysfunction after removal is fairly high, even with nerve sparing techniques. There are solutions for that issue from pills, to shots to pumps, if one wants to accept those methods as their potential future. If biological re-occurrence occurs, then radiation is an option. There are certainly a number of people on this site who have had prostate removal done to their satisfaction.

If the Decipher test comes back with low risk, that will give you some feel for the aggressiveness level and will be used by the doctors for their decisions.

I had a mridian built in MRI radiation machine with very narrow margins but having radiation again, if I had a biological re-occurrence, would be less likely to be recommended versus other ablation type methods.

If I had to make the decision for myself, as a layman, and was someone like yourself doing it at a younger age, I might still lean towards the narrow margin 5 treatment radiation again if I could get a "feel" from the pros as to what % of biological re-occurrence happens outside of the prostate after the prostate had radiation, the status/timeframes of smart targeted non toxic therapy studies being added as an option and if the Decipher test showed low risk, what are the chances that the radiation treatment would last for 20 years vs someone your age, who might have a higher Decipher risk.

My biopsy was VERY similar to yours, a low count of 3 + 4, a few 3 + 3. When I first got the biopsy the consensus was, particularly at my age, "active surveillance" - until the Decipher came in, which at 0.68 was high risk and warranted considering treatment. If not for the Decipher then I would have been on active surveillance and that would have been pretty bad because once my prostate came out it ended up being quite a bit worse than the biopsy let on - which is the reason for the Decipher in the first place. You should request a Decipher.

I agree with Survivor regarding biopsy vs. possible actual state of the prostate pathology. Often pathology shows higher grade after prostate is removed and examined. There are cases when grade is lower upon examination, but I can recall reading that scenario maybe once or twice.

If you decide to do AS please make sure to have biopsy again in 2 years, the latest. My husband had 3+3 in just 3 cores and in 5 years developed 4+7 with aggressive components of cribriform and IDC ! If he had biopsy every 2 years perhaps 3+4 would have been discovered on time and we would definitely choose treatment at that time, no question about that. With 3+4 you have so many options for complete cure with excellent results, vs. 4+3 with cribriform and IDC.
Yes, seek all of the opinions but be very proactive and push for what you want to do, we wish we knew more about correct AS and not rely on our urologist for advice and care. On the other hand, you are already talking to doctors that are inside centers of high competence and I am sure that you and your doctor will choose a good and successful path forward.

Penn said if I chose AS, then biopsy again in 6 months, then one year after that and then every two years after that if everything remained same. PSA every 3 months. DRE every year. I am still scared with that approach. The chances of me getting some sort of treatment is quite high within 2 to 5 years. Why not just get it done with now? Too many things going on in my mind. Waiting to see what Sloan will say. This group has been so much of help!