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Active Surveillance But Rising PSA

I had my first biopsy 4 years ago due to a rising PSA ( 3.5 to 6). Pathology showed one core at 20% with a Gleason score of 6 (3+3). Started active surveillance with PSA check every 3 months. PSA went back down to 4.5 the first year. Since then I have had 3 more biopsies due to slow rising PSA. Most found in any of these biopsies was 2 cores- one at 20% and one at 5% with both being Gleason 6 (3+3).

Urologist put me on Flomax and Finasteride one year ago. PSA was at 4.6 after 3 months but was told you have to double that when on Finasteride. My urologist told me that is equal to a PSA of 9.2. I go back for another PSA test in a couple weeks. Urologist said if PSA reach a 10 that I need to decide on a treatment. The Finasteride is supposed to shrink the prostate but when I asked about the size of my prostate after my last biopsy he told me it was 45 cm. That is the same size that it was 3 years ago so now I am confused.

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Comments

  • Danb author
    2 months ago

    Thanks for the input Will. This whole process is a struggle. The side effects you talked about are the main reason I haven’t gone through any type of treatment. If my psa is still up around a 10 next month then my urologist says he will order an mri and let that be a tie breaker. In the meantime, I am investigating the cyberknife treatment. If anyone has any input on cyberknife I would love to hear it.

  • Will Jones moderator
    2 months ago

    Hi @danb, I was a 3+3 with 3% to 12% in ten of twelve core samples. I stayed on active surveillance for a year. When my PSA jumped to 8.3 I decided to have surgery. Side effects are still an issue 11 months later, but my PSA has remained in the 0.01 range since then. Will Jones ProstateCancer.net Moderator

  • Vinny
    2 months ago

    Danb, I’m kinda in the same boat and was wondering what took place next if anything. Not trying to pry, but I’m curious and like facts.
    Thanks, God Bless

  • Danb author
    2 months ago

    Vinny,
    The doctor took me off the finasteride last October. I am scheduled for another PSA the 3rd week of April. My urologist told me that if my PSA was 10 or higher that we would do an mri and let it be the tie breaker on treatment or not at this time. I will try to post again near the end of April with my PSA results and direction from my urologist at that time.
    Good luck on your journey also and feel free to contact me with any questions.

  • Danb author
    8 months ago

    I saw my urologist on Monday 9-17-18 and he reviewed my current psa of 5.02. Due to being on finasteride you are supposed to double this. He said my true psa was probably somewhere between an 8 and 10. He then took time to discuss all the possible treatments and did a good job of describing the side effects of each. I felt much better when he spent this time with me and took extra care to point out that these side effects were not fun for any of the treatments.
    Due to my psa being “somewhat” stable in the past 6 months was a good thing he said. He then asked my thoughts on pursuing some type of treatment or continuing on active surveillance for now. I asked him if I could stop the finasteride and then get my psa checked again in 6 months. He said that was reasonable and wrote the order to stop the finasteride with a re-check of my psa in 6 months. He also said if my psa then was in the neighborhood of 10 we would do an MRI to see what it shows and make a decision from there. I was much happier with this visit and his approach to me. Now to see if stopping the finasteride has an effect on my psa.

  • ninaw moderator
    8 months ago

    That sounds a lot more productive and clear than the other appointment, @Danb. From what we hear, that detailed information on side effects is really lacking, so I’m glad he took the time to go through it with you. I can see why you’d want to know what your actual PSA is, in order to make an informed decision. The MRI will hopefully make the situation even more straightforward. Thanks for this update! – Nina, ProstateCancer.net Team

  • Tnewman
    8 months ago

    Danb, you are more resilient than me. I admire that. I couldn’t live comfortably knowing I had cancer. I had a 3+3 when I went into surgery and it had turned into a 4+3 in the pathology.
    I will never regret doing the surgery though the side effects are a bummer.

  • ninaw moderator
    8 months ago

    Thanks for this support and perspective, @Tnewman. I hope @Danb will let us know how things go, if he can. – Nina, ProstateCancer.net Team

  • ninaw moderator
    8 months ago

    Hi @Danb, hopefully others will jump in with related experiences. As we’re not qualified to provide medical advice, I can’t comment on the treatment decisions. I would say that you deserve to understand what’s going on with your care, and urge you to get clarification from the doc. If you get to the point of talking treatment, it doesn’t hurt to get another opinion as well. Sharing an article on getting a second opinion here: https://prostatecancer.net/living/second-opinion/. If you can, let us know what you learn at the next appointment! – Nina, ProstateCancer.net Team

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