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 Colleen Young, Connect Director @colleenyoung

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

Jump to this post

@colleenyoung Good I guess. We are going to do active surveillance.

REPLY
Profile picture for wheel1 @wheel1

@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.

Jump to this post

@wheel1 Thank you.

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

Jump to this post

@cygnus Hello My name is Rob, I am a patient with the Mayo Clinic. Although active surveillance is a choice that suites you, I would strongly encourage you to get an appt with Dr Kwon and really take a hard look at the treatments avaible that will afford you best chance at complete remission. My Gleason scores when I was first diagnosed was 4+3=7, there weren't any fancy decipher numbering back then. My PSA had routinely been in the 2 range, in one year, it doubled to a 5.2, that started this journey. I choose biopsies and removal. Looking back at my case and my age, and the drug and pretreatment options that are out there, I may not have become metatstatic. I am now in the beginnings of castration resistance. I have been on hormones now for almost 10 years, pretty much continuous. I have had bony lesions and mainly lymphatic system involvement. Watch and wait to me with your Gleason scores, not decipher, but pure fact of the grade, I would seek Dr Kwons guidance. I have also always had a hard time with a Urologist quaterbacking my Prostate Cancer. It's a weird world with Prostate Cancer. An analogy, ob/gyn handling breast cancer? Does that make sense? Anyway, best wishes on your journey! I pray for your health and for a long healthy life.

REPLY

I would also consider blood biopsies before physical biopsies. To me its a good indicator of undetectable metasis, if you have no circulating tumor DNA, well thats good and your not poking a hornets nest. Just a thought too.

REPLY

If my PSA increases or the MRI shows something new I will definitely seek treatment. I'm 75. My Decipher score was sort of OK. We will see. Thanks for your reply.

REPLY
Please sign in or register to post a reply.