Thoughts on recent diagnosis

Protactinium_91 Member Posts: 5 Member
edited May 2023 in Prostate Cancer #1

I have recently been diagnosed with Prostate cancer and I am trying to justify active surveillance as I really don’t want to endure the side effects from the various treatment types.

My first thought is to get a 2nd opinion of the biopsy (of course they might change the score ).

Another diagnostic investigation might be some genetic evaluation which I am guessing could be done separately, but will it add anything?

My path to the biopsy was due to an elevated PSA reading 5.3ng/ml previous PSA data indicates velocity was 0.7ng/ml/yr (there is no consensus on velocity, but if you plot the individual reading, they were exponential)

DRE was normal, I was given antibiotics to rule out any infections.

As I did not want a biopsy, so I had an MRI and they found a couple of small lesions both PIRADS 4

Interestingly quite a small prostate at 18cc

So, with that information I had a targeted Transperineal (a bit sore after that but at least I had a GA).

Left base adenocarcinoma Glee 3+3=6 (grade 1) 2 out of 4 cores, 29% and positive for PI

Right base adenocarcinoma  Glee 4+3=7 (grade3) 2 out of 2 cores 60% pattern 4 (55% of core amount) no PI

Bone scan negative, but I did glow in the dark for a couple of nights.

I am 63 and everything is functional.

All possible nomograms completed.

My conclusions.

Get biopsy reviewed at Johns Hopkins or somewhere else.

Maybe get genetic test

With such a low PSA, I don’t think there is any spread outside the capsule (thou the MRI did say broad contact with) I don’t think it merits a PMSA scan.

Option 1. Do nothing, no side effects no annual biopsies.

(Maybe some symptom would necessitate some level of treatment in the future)

Option 2. Active surveillance (but if I am not wanting any treatments what is really the point).

Thanks for reading


  • lighterwood67
    lighterwood67 Member Posts: 382 Member

    Sometimes no decision is a decision in itself. Looks like you are doing your research. In all of these cases, the decision to a treatment approach really comes down to the person in the arena. Some of the results come out favorably, some not favorably across a broad range of treatments. A second opinion on a biopsy is always good decision. My granddaughter has her Masters in genetic counseling. She wanted me to get some genomic testing. I thanked her for the information. Then, I told her I already know I have PC. She just gave me that look. And said Ok. Just a little background: At 67 had a RP; Gleason was 4+3=7; currently 72; PSA <.04ng/ml; continent; intimate with wife. Good luck on your journey.

  • Protactinium_91
    Protactinium_91 Member Posts: 5 Member

    Thank you , i am glad you are doing well. I will probably get a 2nd opinion. Maybe for peace of mind idk. (Genetics is such a fascinating subject)

  • Clevelandguy
    Clevelandguy Member Posts: 1,060 Member
    edited April 2023 #4


    At 63 you hopefully have a few decades of life remaining. I would be concerned about the 4+3 as it is on the aggressive side. If it was me I would want to know where inside my Prostate the 4+3 resided, deep inside or close to the edge. You don’t want the cancer escaping the Prostate capsule and spreading . A PET scan could give you a good idea of the location of the cancer. The reason I say this is at 3+4 my cancer was getting ready to leave the barn so to speak and if I would have waited another year or two who knows where I would be today. In the end it’s all up to you to choose your path, there are a lot of great radiation and surgical options available. As Lightwood said, the treatments can produce good to bad results, that’s why I always say great doctors+great facilities = great results. I chose surgery and 9 yrs. later I am still cancer free, intimate with my wife and just use a light Depends pad for an occasional drip. Would I like to be 100% “normal”, you bet but it’s better than the alternative. Radiation such as Cyberknife or Proton beam can also provide great results. Good luck with your choices.

    Dave 3+4

  • centralPA
    centralPA Member Posts: 292 Member

    Hi @Protactinium_91 , I'm an AS person myself. My background is I had about a 5.3 PSA reading (bounced around that a bit) with a 140cc prostate. A measure you didn't mention is PSA Density (PSAD), for which a happy place is below 0.10 or 0.15 if you've had a negative biopsy. Mine was 0.03, so really low. I had a HoLEP procedure to improve urinary performance, so the ratio is now 0.02, which is again really low, and gives me confidence on my AS path (I am 3+4, <5% type 4).

    Your value is almost 0.30, which is *really* high. Your 4+3=7 cancer plus your having some on both sides puts you squarely into Unfavorable Intermediate territory.

    The docs will probably recommend removing it and some lymph nodes too. Or radiation plus ADT.

    An in-between course of action is maybe to do just the radiation and no ADT? Just spitballing...your prostate is really small, which means it won't take much radiation to dose it. You could maybe get the LDR Brachy seeds implanted, which is basically no worse than your biopsy. Or HDR Brachy? Or external beam. I am just thinking the small prostate could be a positive here.

    I don't know what the docs would say, if you declined the ADT treatment, but it seems like a way to keep the cancer back on its heels with little to no side effects.

    Them's my thoughts. Completely understand the desire to avoid side effects, but I watched an acquaintance expire from PCa, and have a strong desire to avoid what he went through too. It's a roll of the dice.

    Best of luck, shipmate!

  • Protactinium_91
    Protactinium_91 Member Posts: 5 Member

    Tbh, prostate cancer was never something I had thought much about, but my awareness has grown.

    I reckon I will make it to retirement age :) I have read a lot about aggressive cancer but it's not well defined (might be a pun there) The way I would define it would be not just in reference to how the cells look in relation to the normal cells but in relation to time. When you get the first biopsy its hard to judge how long it took the changed cells to get that way. It might of been a few years, but for a lot of guys that 2nd biopsy is done on the removed prostate.

    Another MRI (or PET if available) at some point might give a measure of aggressiveness.

  • Rob.Ski
    Rob.Ski Member Posts: 155 Member

    Pretty young at 63 to do nothing. I was on AS with gleason 3+3 but had high volumes in 2 cores and AS docs were apprehensive to continue. Had RP a little over year ago, fully continent, sexually active. Pathology after RP was 3+4. Im happy with my outcome so far. Made it 1 year undetectable. Find a doc and hospital with lots of experience, research that specific doc's results. You may find a very experienced doc's outcomes are more acceptable to you than general stats for surgery or radiation procedures.

  • Protactinium_91
    Protactinium_91 Member Posts: 5 Member

    Thank you for your suggestions. Statistics are not really very helpful guide as to what to do sometimes.