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mac2237
mac2237 CSN Member Posts: 10 Member

Hey all,

I was told I was posting on old comments so hopefully this is to a more recent arena. I was diagnosed on 12/2023. Started as 4+3 later changed to 3+4. Have a quite a bit of cores that are cancerous, but low PSA, no symptoms. I've had Prolaris done, came back Intermediate Unfavorable, but very low prognosis for metastasis and mortality. I recently had Decipher done on a 2nd biopsy and came back low as well. I've been on active surveillance and before every test I've been told surgery(as well as immediately after being diagnosed). Now I'm being told, active surveillance is reasonable as well as SBRT radiation. Anyone in the same boat or have gone through the same?

Comments

  • Old Salt
    Old Salt CSN Member Posts: 1,653 Member
    edited July 4 #2

    Your scenario is not at all uncommon. Even though you do have prostate cancer, you have several options to consider for treatment. Here is my very brief advice:

    1: Take your time to become more knowledgeable about these therapies. You are on the right path as you have already gotten some very useful data (Prolaris, Decipher, your biopsy).

    2: Consult with the best in each specialty (surgery, SBRT, brachytherapy etc.)

    3: If possible, also consult with a widely recognized national cancer center. The advantage of such a consultation is that you may get more neutral (less biased) advice.

    What's your age and do you have co-morbidities that have to be taken into account? Urinary issues? Size of your prostate? Please provide us with recent PSA data.

    I assumed you are in the US; is that correct?

  • mac2237
    mac2237 CSN Member Posts: 10 Member

    Happy 4th. Yes I'm in the US. Im 56, the prostate is actually smaller in size and last PSA 4.88. other than that pretty healthy.

  • Wheel
    Wheel CSN Member Posts: 243 Member

    If you could share more details of your biopsy regarding the number of cores diagnosed and percent within the cores. I don’t know if you had a PSMA Pet, but assuming it showed nothing outside the prostate. Your genomic testing of an intermediate unfavorable Prolaris and then a low Decipher score continues that bubble decision. I certainly would lean against active surveillance (AS) with the unfavorable Prolaris, but then the low Decipher seems to contradict that and is certainly more favorable. Your initial biopsy was a 7 (4+3), then changed to a 7 (3+4). That also makes the decision difficult. It would have been easy if it was a Gleason 6 to decide AS with that Decipher then. What was your Decipher score? Clearly going with AS for the time being keeps your quality of life intact without the potential side effects. That could be significant at your age if in a relationship. Also the longer on AS, their continue over time to be improvement’s in Surgery and Radiation that minimize side effects and advancements from clinical trials. If you could put your ultimate treatment off for several years who knows what the treatment might be. That being said, going on AS requires a substantial investment on your part to obtain regular PSA’s, more MRI’s to compare to your existing and even additional biopsy’s. In a way you hate to be in the position of not having a clear cut decision, but at the same time having the opportunity to possibly delay treatment not everyone gets. I don’t envy being in that position. I would at least accept in my mind that treatment is likely inevitable at some point and coming to that acceptance might help in your decision and between surgery, radiation or AS.

  • Clevelandguy
    Clevelandguy CSN Member Posts: 1,336 Member
    edited July 5 #5

    Hi,

    As others have stated you will need more frequent MRI’s and Biopsies while on AS. If it was me I would want to know where the cancer was located inside my Prostate. If it’s deep in the middle you have more AS time than if it’s close to the edge of your Prostate. Don’t want it to get into the wall/nerves or escape.

    Dave 3+4

  • mac2237
    mac2237 CSN Member Posts: 10 Member

    The decipher score says low at 0.21 I have 6 cores and the highest is 40% I appreciate the feedback and yes I'm aware of eventually having some type of procedure. But like it was mentioned and my hope is that I could hold off enough for procedures to get even better. It's a tough one

  • Wheel
    Wheel CSN Member Posts: 243 Member

    mac2237,

    That really is a good Decipher score, yet again 40% is significant involvement. I totally agree with procedures getting better, as with Surgery in just the past couple years. It has gone from robotic laparoscopic surgery with three or four incisions to just one incision with the new single port machine and home the same day as the procedure, with less side effects. Procedure’s can not only be nerve sparing but Puboprostatic ligament sparing to improve incontinence. Radiation has improved with the hydrogel spacer, like space oar to reduce rectal issues and more single focused ultrasound ablation treatments like HIFU all more recent. Best of luck!

  • mac2237
    mac2237 CSN Member Posts: 10 Member

    Thank you