What do you wish you'd asked? + ED after more than 3 years

Mark3plus4
Mark3plus4 Member Posts: 1 Member
in Prostate Cancer #1

Hi all,

I'm 56. Was diagnosed last year Gleason 3+3 and chose active surveillance. That has progressed this year to Gleason 3+4 in 2 cores with some cribriform patterning. Decipher is 46 with intermediate risk. I have to choose a treatment and hate all options. I find that doctors don't give you the whole picture and I am frustrated that we must figure this out. A doctor recently suggested I go on a forum and ask "What do you wish you'd asked before you had treatment?" So I am. That's Question #1.

Question #2 is: does ED with radiation continue to get worse after 3 years compared to surgery? Do they stay about the same after 3 years? It's difficult to find a source for after 3 years.

Question #3: should any cribriform rule out radiation? The radiation doctors I speak with don't seem to think so but I'm not sure why.

I'm sure I'll have more questions down the road.

Thankyou for being a community. I live alone and find it difficult to reach out and that makes all this hard.

Mark3plus4

Comments

  • LuckyKYGuy
    LuckyKYGuy Member Posts: 9 Member
    #2

    My situation was fairly similar. Diagnosed at 58 with Gleason of 6 (3+3), PSA Of 5.5 and Decipher was low risk 0.37. Active Surveillance was my decision then. Fast forward to 2024 and I'm 59 and it's time for a follow up biopsy. My PSA was 4.57. However, the follow up Biopsy showed everything had bumped up to 7's (3+4) and one sample was an 8 (4+4). Like you I was presented with a set of options and given a few weeks to think it over.

    The first thing I did was purchase Dr Patrick Walsh's book "Surviving Prostate Cancer". It's a fairly long book but I read it cover to cover within a week and then read it a second time. I wanted to know as much as I could about what I had and what I was facing. My Dr answered every question I asked but the book has been a fantastic reference guide for me as there'd be times I'd come up with a question and I'd go to the book rather than emailing my Dr in the middle of the night.

    At any rate, I chose to have the Robotic Assisted Radical Prostatectomy vs. Radiation and Hormone Deprivation Therapy. For me, I decided that I could deal with surgery side effects and get on with my life much better than dealing with the treatment side effects over the next couple of years. Plus, I just wanted the cancer out of my body and the surgery provided the best and quickest option to make that happen.

    My surgery was a month ago today….the Foley catheter for the 7-10 days after surgery is by far the worst part. Of course I'm working on the incontinence which has become more annoying than anything else because I refuse to let it stop me from living and going on with things I normally do. Both my wife and I have had our share of issues with our "parts" over the last five years so we'd already modified our sex life before I was ever diagnosed and I'm not too worried about if the erectile dysfunction is permanent or not. If I can see the incontinence improve by 75-80% in within the next 11 months I'll be very happy with things. Obviously 95% improvement would be my end goal and I still have a long way to go. Plus, the final pathology showed everything was 3+4 (7) with NO 8…and all margins and lymph nodes were negative. To me, that alone was worth the surgery.

    Only you can make the decision which way you want to go…but I promise you if you haven't read Dr. Walsh's book pick up a copy. Again, I have no regrets about my choice.

  • Rob.Ski
    Rob.Ski Member Posts: 172 Member
    #3

    I got surgery at Hopkins 2.5 years ago and faired very well as far as side effects. Pretty much continent after catheter and mild ED overcome with viagra, not necessarilly required. My surgeon showed me a published paper of his patient outcomes. Not sure how many docs keep track of this but, makes sense to me to find out your docs outcomes vs. General stats for any treatment you get.

    Best of luck in your decision.

  • Marlon
    Marlon Member Posts: 111 Member
    #4

    I too read the Walsh book which explained a lot of things much better than my doctors. I also read the book "After Prostate Cancer: A What-Comes-Next Guide to a Safe and Informed Recovery by Arnold Melman, Rosemary Newnham"

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #5

    Hi,

    To answer question #1, go to the American cancer society website and study the various Pca treatment types. That should give you some questions to ask your Urologist and Oncologist.

    Question #2, I would think that after 3 yrs. Your ED has plateaued but not having radiation it’s an educated guess.

    Question #3, From what I have learned here, with cribriform radiation is not that effective. If it was me and I had cribriform, it would push me towards surgery as long as the cancer was contained within the Prostate.

    I had robotic surgery and both my ED and urine leakage gradually improved til about the 1.5-2 yr. mark. In my opinion the best thing you can do is find a great set of doctors plus the best facilities to get the best results. Second opinions are also a good idea.

    Dave 3+4

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