Am I wrong in my wishful thinking.

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Wheel
Wheel Member Posts: 5 Member
edited March 14 in Prostate Cancer #1

Hello everyone. I’am 70 from Southern Ca. For years my PSA was stable at 1.9, then in Nov 21, it jumped to 3.0 (had Covid in Sept and studies indicated could cause increase). Retested Jan 22, fell to 2.7, retested July 22, fell to 2.4 (thought out of the woods) then when my regular Nov 22 test it rose to 4.0, then down to 3.4, down 3.1, up 3.7. An MpMRI came back a PiRADS 2 for a possible indication of past prostatitis. PSA continued bouncing, then the ExoDx urine marker test came back in Oct 23 exceeding 60, I guess they want under 15. In Jan another MpMRI, this time a PiRads4, lesion .9x.5x.9. Then MRI fusion ultrasound biopsy 12 core, 3 from lesion. Totally surprised the lesion benign, however more surprising two (3+3)’s, two (3+4)’s and one (4+4) with only 8% involvement. Currently awaiting PSMA Pet results and Decipher genomic tests results.

Here is my wishful thinking. I know the accuracy of the MpMRI is highly accurate and yet only the lesion was spotted. I went to review NIH studies on false negative studies and found one that reevaluated the biopsy’s of prostate’s removed from a Radical Prostatectomy (RP) with the prior core biopsies. 68 out of 3,105 sectors were identified with false negatives. What is significant from this study is that 63% missed were (3+4), 17% missed were (3+3), and 25% missed were (4+3). It states zero missed in (4+4).

Now to add to my wishful thinking, another study reports after RP, 60% of Gleason 8’s are downgraded to a Gleason 7 if the core biopsy only had one (4+4), was less than 50 % involvement and the other cores had at least a 3 in their equation. So reinforcement of my wishful thinking that my (4+4) is an outlier and instead of advanced (this one core) I could be low intermediate. I also read they do consider low intermediate for Active Surveillance (AS), however presently everyone hears the Gleason 8 core and seems to want to push me to treatment sooner than later. It seems there are so many new treatments in the pipeline with far less side effects that could come out of clinical trials in the next 2 to 3 years. My main concern is if I wait and it leaves the capsule but is still caught really soon because of continued watching does that change my treatment from being able to get an RP.

If anyone has Dr’s or Hospitals they recommend in SoCal for a good 2nd opinion.

Thanks

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  • Clevelandguy
    Clevelandguy Member Posts: 1,039 Member
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    Hi,

    The PET scan results should tell you if the cancer has spread outside of the Prostate. Not a bad idea to get a second opinion also. The PET scan should also tell you where inside the Prostate the cancer is located. If the cancer is not near the edge of the Prostate that is a good thing. The 4+4 is on the aggressive side and in my humble non medical opinion is nothing to do AS on. Sounds like your working on the process.

    Dave 3+4

  • Wheel
    Wheel Member Posts: 5 Member
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    Thanks for your input Dave. I may have just received more for my wishful thinking. My PSMA Pet was uploaded to my chart and it states mild bilateral peripheral radiotracer avidity in the posterior lateral right gland measuring 3.1 maximum SUV and in the left gland measuring 3.6 maximum SUV. States their is No node involvement and contained within the capsule.

    Again it appears these SUV uptake values are very low and they describe as mild. It goes back to maybe my one Gleason 8 core of 4+4 was a Gleason 7. I know I have the cancer but just feel I have more time to take to address the issue.

  • Old Salt
    Old Salt Member Posts: 1,358 Member
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    Yes, you definitely have time to continue researching your situation. Not forever though!

    I hope you can find the best solution for your case. Don't hesitate to ask for second opinions from well-regarded prostate cancer centers.

  • Steve1961
    Steve1961 Member Posts: 547 Member
    edited March 6 #5
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    UCLA DR ROBERT REITER look him up he will be performing salvage surgery on me at the end of the month

  • Wheel
    Wheel Member Posts: 5 Member
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    Steve,

    Thank you for the name. As soon as I have all my test results and I see the first urologist oncologist my urologist refers me to, I plan for a second opinion on treatments. Currently I am leaning towards surgery.

  • Arthurdent
    Arthurdent Member Posts: 14 Member
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    Dr Scholz and Alex of the Prostate Cancer Research Institute have very good YouTube videos on the very subject you have described. And they are based close to you. Watch the videos. If you contact a representative (free!) they can guide you to doctors and clinics they hold in high regard.


    Good luck