Newly Diagnosed and Need Help

Posted by cygnus @cygnus, Jun 17 6:45pm

First, I would like to extend my appreciation to all those who contribute to this site. I have been an observer ever since I was diagnosed and now have to decide what to do. I would appreciate your insights. I am 75, my wife died from glioblastoma and I moved to PA from FL to help my daughter who is paralyzed on the left side from 2 strokes (genetic veinous interference.) So I have a reason to live. I’m in great shape and work out 4 times a week. No co-morbidities.

This all started sort of cavalierly I insisted on a PSA test with my PCP on 3/15/26. 2 years prior is was 3.7, most recently it was 6.1. His comment was “what would you do if you had PC?” My response was “depends on the score.” Referred to a urologist, insisted on an MRI and that came back PiRads-4 on 4/12/26. Results below. The urologist recommended a biopsy, got it on 5/10/26.) Results on 6/1/26. See below:

My question is, what should I do from here? I plan on a second opinion on the pathology, most likely from John Hopkins, but assuming the initial pathology is correct, what do people think is my best path forward?

I have access to John’s Hopkins, UPMC and UPENN. They are all commutable.

Biopsy:

1. Prostate, right posterior medial, biopsy:
Prostatic adenocarcinoma, Gleason score 3+3=6 (Grade Group: 1), involving 2 of 3 core biopsies.
The carcinoma involves the cores with total linear lengths of 1 mm (10%), and 4 mm (20%), respectively (approximately 10% of the entire tissue submitted).

2. Prostate, right posterior lateral, biopsy:
Prostatic adenocarcinoma, Gleason score 3+3=6 (Grade Group: 1), involving 3 of 4 core biopsies.
The carcinoma involves the cores with total linear lengths of 5 mm (30%), 6 mm (60%), and 1 mm (10%), respectively (approximately 20% of the entire tissue submitted).

3. Prostate, right base, biopsy:
Benign prostatic tissue, no tumor present.

4. Prostate, right anterior medial, biopsy:
Benign prostatic tissue, no tumor present.

5. Prostate, right anterior lateral, biopsy:
Prostatic adenocarcinoma, Gleason score 3+3=6 (Grade Group: 1), involving 2 of 4 core biopsies.
The carcinoma involves the cores with total linear lengths of 1 mm (10%), and <1 mm (5%), respectively (approximately 10% of the entire tissue submitted).

6. Prostate, left posterior medial, biopsy:
Benign prostatic tissue, no tumor present.

7. Prostate, left posterior lateral, biopsy:
Benign prostatic tissue, no tumor present.

8. Prostate, left base, biopsy:
Benign prostatic tissue, no tumor present.

9. Prostate, left anterior medial, biopsy:
Benign prostatic tissue, no tumor present.

10. Prostate, left anterior lateral, biopsy:
Prostatic adenocarcinoma, Gleason score 3+3=6 (Grade Group: 1), involving 20% of 1 of 3 core biopsies.
The total linear length of carcinoma is 2 mm in the core.

11. Prostate,Right middle prostate sole left, biopsy:
Prostatic adenocarcinoma, Gleason score 3+3=6 (Grade Group: 1), involving 4 of 4 core biopsies.
The carcinoma involves the cores with total lengths of 10 mm (80%), 12 mm (discontinuous, 80%), 2 mm (20%), and 5 mm (50%) (approximately 60% of the entire tissue submitted).

MRI:
Impression
PI-RADS version 2.1 Score: 4 , high probability of prostate
cancer in the right posterolateral peripheral zone midgland.
No evidence of extraprostatic extension. Differential
diagnosis also includes sequelae of infectious/inflammation.
Findings to be relayed and documented by Teleradiology
assistant to the referring physician. A notice that an
imaging finding is present on this exam which may require
follow up will be sent to the patient.
Narrative
EXAM:
MRI PROSTATE WITHOUT AND WITH CONTRAST
HISTORY:
Elevated prostate specific antigen (PSA).
PSA value: 6.4 ng/mL
COMPARISON:
CT abdomen and pelvis May 2024
TECHNIQUE:
Multiparametric prostate MRI utilizing standard sequences
in three orthogonal planes without and with intravenous
contrast.
CONTRAST: 8.2 mL Vueway intravenously.
FINDINGS:
PROSTATE:
Volume: 3.1 x 4.4 x 4.5 cm for a volume of 32.1 mL, PSA
density is 0.2 ng/mL/cc based on ellipsoid calculations.Quality: Good
Hemorrhage: None
Peripheral zone: Diffuse linear and wedge-shaped hypo
intensities.
Transition zone: Moderate heterogeneity consistent with
prostatic hyperplasia.
Lesion 1:
Location: Right posterolateral peripheral zone midgland
image 15 series 1007, 1008, image 17 series 801
Size: 5 mm
T2: Moderate T2 hypointense area
DWI: Focus of positive restricted diffusion
DCE: Mildly positive
Prostate margin: Abuts the prostate margin for less than 2
cm.
Lesion overall PI-RADS 2.1 category: 4
PELVIS:
Neurovascular bundles: No evidence of involvement is
identified.
Seminal Vesicles: Unremarkable.
Lymph Nodes: No lymphadenopathy.
Urinary Bladder: Unremarkable.
Osseous Structures: Unremarkable.
Other: Trace bilateral fat containing inguinal hernias.

I greatly appreciate your feedback.

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

Profile picture for survivor5280 @survivor5280

With G6, active surveillance would be likely recommended by any urologist. Even G7 as long as you are 3 + 4 and not 4 + 3 or unless you have a high decipher (I fell into that category, 3 + 4 but high decipher).

As someone who works extensively with AI, be wary of the response. For one it's likely cached, so not the latest (you tell the AI to "refresh your knowledge" and "think hard" and "no guessing or cached answers" to help overcome that). Remember there is very little "I" in AI, they are web scrapers who can intelligently assemble a readable response based on multiple sources, and those sources may be garbage. AI needs trained to answer properly. I'm not saying what it gave you is wrong, just to verify it outside of AI.

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@survivor5280
Thanks for pointing this out - I was just about to say that same thing. Also , regarding "training" - one can unknowingly "train" it to say what we wish to hear ! If one asks it the same thing enough times it will try to guess what you want to hear - just horribly scary thing to think that some people do not know all about imperfectness of AI ☹️.

Nobody should ever rely on AI for medical advice. It is OK to use it for summarizing research papers for example, or getting some general idea about particular condition or about all options for a treatment but NEVER take it as 100% correct or as adequate to replace a doctor or your own reasoning.

REPLY
Profile picture for Jeff Marchi @jeffmarc

You only have 3+3 which are not really aggressive, Some Consider it pre-Cancerous. The problem is you have 12 3+3 cores. If you have over six, that is considered something that you should treat even if it’s all 3+3.

Radiation would make a lot of sense. Five sessions of SBRT radiation could knock it out quickly. My brother had it done at 77 and it worked quite well for him. The only problem he had was some difficulty urinating, which was resolved by taking Flomax every other day.

Have you spoken to a radiation oncologist? You could consult with a couple of them, which you already seem to be planning on doing.

You could get a decipher test to see what your chance of reoccurrence is. If it was really low, you could still consider active surveillance.

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@jeffmarc My Decipher score came back as 0.41 so I guess I will be on active surveillance for a while. I see the urologist tomorrow to discuss the rather lengthy and complicated report.

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My Decipher score came back as 0.41 so I guess I will be on active surveillance for a while. I see the urologist tomorrow to discuss the rather lengthy and complicated report

REPLY
Profile picture for cygnus @cygnus

My Decipher score came back as 0.41 so I guess I will be on active surveillance for a while. I see the urologist tomorrow to discuss the rather lengthy and complicated report

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@cygnus
That is good news and makes you more comfortable in your knowing that you can for now go AS to allow you caring for your daughter. Just definitely keep monitoring AS, you want to be here a long time for your daughter.

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Profile picture for wheel1 @wheel1

@cygnus
That is good news and makes you more comfortable in your knowing that you can for now go AS to allow you caring for your daughter. Just definitely keep monitoring AS, you want to be here a long time for your daughter.

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@wheel1 Thanks, that was a relief. Yes I need to be around for my daughter. Helping her with her paralysis is a full time job, that is my passion now.

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Profile picture for cygnus @cygnus

My Decipher score came back as 0.41 so I guess I will be on active surveillance for a while. I see the urologist tomorrow to discuss the rather lengthy and complicated report

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@cygnus
Definitely make sure to get PSA tests no less than every three months. I’ve heard from so many people that their urologist let their information from tests slide, resulting in them having very high Gleason score cases.

May your AS last for many years

REPLY
Profile picture for Jeff Marchi @jeffmarc

@cygnus
Definitely make sure to get PSA tests no less than every three months. I’ve heard from so many people that their urologist let their information from tests slide, resulting in them having very high Gleason score cases.

May your AS last for many years

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@jeffmarc Will do. Thanks

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Profile picture for cygnus @cygnus

@jeffmarc My Decipher score came back as 0.41 so I guess I will be on active surveillance for a while. I see the urologist tomorrow to discuss the rather lengthy and complicated report.

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@cygnus, how did the discussion with the urologist go?

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Does anyone know if prostate biopsy slides sent to have 2nd opinion can have Decipher score be done at same time? My son's doctor willing to send slides to Mayo for 2nd opinion but he really concerned about getting Decipher score as his Gleason score is 7(4+3). His understanding is that Mayo will keep his slides. Should 2nd opinion of biopsy and Decipher be sent to a cancer center lab rather than Mayo as he's afraid a pathologist may not specialize in prostate if not a cancer center?

REPLY
Profile picture for ann31 @ann31

Does anyone know if prostate biopsy slides sent to have 2nd opinion can have Decipher score be done at same time? My son's doctor willing to send slides to Mayo for 2nd opinion but he really concerned about getting Decipher score as his Gleason score is 7(4+3). His understanding is that Mayo will keep his slides. Should 2nd opinion of biopsy and Decipher be sent to a cancer center lab rather than Mayo as he's afraid a pathologist may not specialize in prostate if not a cancer center?

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@ann31
My understanding is actual tissue is sent for Decipher, testing while additional opinion’s on biopsy readings is done from slides. So yes decipher can be sent independently of the slides to Mayo by what pathology is actually holding tissue. Decipher is also sent to a specific laboratory that does the Decipher testing, not individual hospital labs that might do second opinions on the biopsy slides.

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