My Current Story

[SkiVail]

63 yo married white male, PSA of 5.2 went up to 6.4 in one month, PCP referred to urologist. Urologist ordered an MRI which showed a lesion. Biopsy followed with startling news that 3/12 cores showed cancer: 2 spots next to each other at 3+3 and one on the opposite side at 3+4. Currently meeting with urologists for RP and radiology oncologist for SBRT (Cyberknife). Plan to make a treatment decision by end of October, 2024. Also awaiting Decipher results.

[NanoMRI]

I found additional pathology opinions very necessary because my mpMRI findings did not align with the original 3+3 opinion. 2nd and 3rd opinions were 3+4, final after RP 4+3. My genomic testing finding was under-graded because the biopsy samples did not include any of the G4 that was indeed present.

I consulted with multiple surgeons and radiation oncologists (CyberKnife, HIFU, Bracy). All rad ons'c recommend surgery based on mpMRI findings that sufficient safe margins were not present for their treatment methods.

If I had a do-over I would have multiple additional imaging methods such as PSMA and fluciclovine looking for any signs of spread. (added) And if I were having any lymph nodes removed I would have the extended pelvic lymph node dissection method using the frozen section pathology method - starting with the common iliac nodes (this was my third procedure - salvage ePLND). So many of us realize spread despite favorable treatment strategies and favorable pathology post RP. Hope this helps. All the best!

[SkiVail in reply to NanoMRI]

Thanks for the input!

[NanoMRI in reply to SkiVail]

added an IMO important sentence of my experiences/lessons.

[Tall_Allen]

We've all had that initial panic, and feeling that it is important to make a decision soon. In fact, it is much more important that you give yourself more time. Here's why there is no rush:

prostatecancer.news/2016/08...

First, it's a good idea to get a second opinion on your biopsy slides from the best:

pathology.jhu.edu/patient-c...

If you have a minimal amount of pattern 4, and a low Decipher score, you may be a good candidate for active surveillance.

[WhatHump in reply to Tall_Allen]

TA, could you link to something that says minimal Grade 4 is a candidate for AS? I thought anything above 3 meant action, though not necessarily a rush. Thanks. I want to give good Layman advice to guys who come to me to talk.

[Chasbearcat999 in reply to WhatHump]

Here is a link .

bmcurol.biomedcentral.com/a...

AS for 3+4 is becoming a much more accepted protocol for 3+4 than in the past because imaging is so much better.

There are many variables, but you can and I think the keys are;

Accurate initial imaging.

PSMA scan to verify results of MRI.

Accurate biopsy reading. The link Tall_Allen provided to John's Hopkins is an ecellent resource.

[NanoMRI in reply to Chasbearcat999]

My 3+3 was upgraded to 3+4 on second and third opinions <including JHU); final after RP 4+3.

My Ga68 PSMA PET CT was 'clear' whilst Ferrotran nanoparticle MRI successful identified five of six cancerous lymph nodes at uPSA 0.13.

My melanoma surgery six years ago had excellent surgical pathology. Yet here I am on duplet immunotherapy for singular metastatic melanoma liver lesion.

But these shares are just my experiences.

[BettyandBob in reply to Tall_Allen]

Hey TA — just wanted to say that I really appreciate the sage advice and encouragement you provide the group.

Thank you.

[Tall_Allen in reply to BettyandBob]

My pleasure, thanks.

[pd63]

I was diagnosed low risk intermediate with low volume pattern 4 and decided on AS as an option 2nd biopsy showed no change after 12 months psa increased from 4.2 to 5.2 I was advised AS was still an option but decided after much deliberation to have treatment.I didn't rush into it and glad of it, cancer panic can muddle the brain.

Whether I made the right decision time will tell but if I had a crystal ball I'd be a millionaire.

Take your time, get 2nd opinions if you want to and don't look back look forward, mindfulness became my friend although it takes some practice, best of luck for you going forward.

[Fiddler2004]

Maybe consider meeting with / adding a medical oncologist to the team and have them coordinate any treatment decisions. (I have my MO running the show) 🙏

[aceace12]

dont panic .. get second opinion .. i had very similar numbers .. PSA was not as high .. i have been on AS for 5 years ....

[MauiJef]

sorry to hear you joined our club. But like others have said, take your time , do your research before you jump into an immediate treatment. I’m similar to you , I’m 56 had my first biopsy 2/23 came back with 3 cores ,3+3 n 3+4 and the 4 was 10% or less. After reaching out to this forum and others, I realized I have time to make an informed decision. I’m currently doing active surveillance and very happy with that decision. I’ve spoken with a R/O, several surgeons and several radiologists and all agree that I’m a good candidate for AS, even with some 3+4

I’ve done another MRI which didn’t show anything new. Some I’m still researching and talking with others so when I need to decide on a treatment I’m ready to go.

Good luck with your journey.