What do you think comes next for me?

Posted by kevinm4 @kevinm4, 2 days ago

I have been reading about the situation of others for the last few months. Now, I have one of my own. April 8th, I finally had a biopsy of my prostate. It was a transperineal one performed at Barnes Hospital in St. Louis. Here are my important numbers before the biopsy and then I will go over the biopsy. Multiparametric MRI in February 2025. PIRADs 2 and PSA density .16. ISOPSA 15.9 (Jan. 26)and most recent PSA 5.33 (Jan. 26)
The biopsy was performed with nothing to aim for so samples were taken from 10 different areas of my prostate. Five of the areas came back as benign prostatic tissue. Two of the areas came back prostatic adenocarcinoma Gleason score 3+3=6, grade group 1. Two areas came back as Atypical small acinar proliferation and the last one as High-grade prostatic intraepithelial neoplasia.
If I have left out anything you want to know, just ask. I have the test result, but can't speak to anyone about it until Monday, the 20th, so I would appreciate input as to how you see my situation.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for kevinm4 @kevinm4

@kevinm4 I guess I did something wrong. A doubling calculator indicated it would be 30.6 months.

Jump to this post

@kevinm4
That’s a good long doubling time. At least you have time to see what’s really going on.

REPLY

At your age if you have a large prostate that might yield an elevated PSA. Other suggestions to you are oil the money--AS for the moment and further testing (another MRI and follow-up biopsy) with more frequent PSA monitoring. From what you describe, you have some time to figure this out.

REPLY

At 67 y/o, with a PSA of 7.8 and PIRADS 3,4 & 5 lesions I was diagnosed with low volume Gleason 3+4 (details in my profile).

I decided on active surveillance after receiving a Decipher score of 0.22.

You should ask for a Decipher score test, as it is an independent measurement of the aggressiveness of your Gleason 3+3 cancer. Gleason 3+3 is likely to generate a low risk Decipher Score, but you should insist on receiving this test result.

Besides the Decipher score ask for the Decipher GRID report, which is also generated for every test done…it provides additional information regarding the nature and features of the cancer taken from your own body, and in that sense, is even more relevant than the more generic Gleason score you have received.

I’m now 2.5 years into my AS protocol and my latest mpMRI and PSA doubling time have been very favorable. My last PSA test came in at 6.5 and all three original PIRADS lesions were not visible on my latest (3rd) mpMRI.

I did hundreds of hours of research regarding AS and implemented a protocol that works for me.

You need to do your own research and decide what works for you, based on your own risk tolerance.

There’s now a website evidence.zone that has most of the research I found, all in one place, that I recommend anyone who is recently diagnosed to review…it will save you a lot of research time.

I am not a physician, so this is not medical advice; but no matter what your treatment or AS decision, you need to be your own advocate.

All the best!

REPLY

What to do next:
> get a 2nd opinion on the biopsy slides.
> get a 2nd opinion on the MRI scan.
> get the biopsy tissues sent for a biomarker (genomic) test.
> get a genetic (germline) test.
> at your next PSA test (in a few months), also have them test your “Free PSA.”

If it were me, I would hold off on having another biopsy so soon; you do not want to turn your prostate into a pincushion. (Also, whenever the “next time” is, be sure it’s an MRI-guided biopsy.)

Continue active surveillance. When you get all that information back and can better gauge the cancer status, then (again) consider what next……

REPLY

A lot of good advice from all of you. Thanks so much!

I am a former lung cancer patient, so this isn't my first cancer rodeo. After listening to various doctors I picked the treatment I wanted. My lung cancer has been in remission for over nine years, but I have to say navigating the prostate cancer landscape is far more difficult and much more confusing than anything I experienced with my lung cancer.
Might I ask: has anyone reading this conversation tried IMRT for their prostate?

REPLY
Profile picture for kevinm4 @kevinm4

A lot of good advice from all of you. Thanks so much!

I am a former lung cancer patient, so this isn't my first cancer rodeo. After listening to various doctors I picked the treatment I wanted. My lung cancer has been in remission for over nine years, but I have to say navigating the prostate cancer landscape is far more difficult and much more confusing than anything I experienced with my lung cancer.
Might I ask: has anyone reading this conversation tried IMRT for their prostate?

Jump to this post

@kevinm4 What is your age?

REPLY
Profile picture for kevinm4 @kevinm4

@kevinm4 congralutations! definitely focus on recover from surgery

REPLY

Your case sounds like the docs could recommend active surveillance.

One way to think about leaving things alone, even though it's ACK! CANCER!! is there is even a movement among some docs to renaming Gleason 3+3 GG1 so it won't be called cancer.

Another way to think about it, if your docs recommend active surveillance, is, since all the treatments for any prostate cancer can be toxic, active surveillance is giving you some more years of side effect free life.

They won't recommend this course of action unless they are very confident you are not compromising any of your options if whatever is going on evolves into something more serious.

A way to increase your odds of doing well no matter what you are eventually prescribed is to make sure to get regular exercise. It is dawning on more cancer docs that patients that exercise do much better than patients who don't.

REPLY
Profile picture for kevinm4 @kevinm4

A lot of good advice from all of you. Thanks so much!

I am a former lung cancer patient, so this isn't my first cancer rodeo. After listening to various doctors I picked the treatment I wanted. My lung cancer has been in remission for over nine years, but I have to say navigating the prostate cancer landscape is far more difficult and much more confusing than anything I experienced with my lung cancer.
Might I ask: has anyone reading this conversation tried IMRT for their prostate?

Jump to this post

@kevinm4 You’re right about lung cancer vs prostate: we have way too many choices with way too many variations, so choosing the BEST treatment can be daunting!
At your age 72, IMRT is an excellent treatment if needed. Yes, it’s much longer than 5 SBRT (cyberknife, etc) sessions, but it is generally gentler on your insides most of the time.
Of course, I am allowing for exceptions at both ends of the spectrum, but IMRT (EBRT, etc) delivers the same amount of radiation as SBRT but over a 5-7 week span; so it’s less of a shock each time you get treated.
I had salvage therapy using IMRT -25 sessions as opposed to traditional 39. Studies showed increased SE’s short term but they were equal to the traditional method at 6 months; so, in effect, no difference.
You are G3+3 right now so AS is what you want; but if you become G3+4, treatment would probably be necessary and if you have the time IMRT is no big deal.
Phil

REPLY
Please sign in or register to post a reply.