Decision on moving forward

Trini2
Trini2 Member Posts: 9 Member

Hi! I am a 60yr old gentleman with Prostate Cancer and I have questions on how to move forward with my treatments. Initially I was diagnosed with prostate cancer PSA at 79.7 back in Jan 2024 and have done a biopsy as well as a petscan and they also found out that I had a kidney stone a size of 3mm, which has since been removed. I just recently had a PSA done again and it's at 4.0, because I have a scheduled MRI coming up. My Uroligist did start me out with a hormone treatment and I have another scheduled for November. I am also scheduled for Radiation treatment later this month and wondering if I should go through it because my PSA is now 4.0?

Comments

  • Josephg
    Josephg Member Posts: 490 Member

    Can you provide us with more information? What were your biopsy results? What was you Gleason Score? With additional information, we can have a good discussion on your particular case.

  • Clevelandguy
    Clevelandguy Member Posts: 1,272 Member

    Hi,

    From what I understand your 1st PSA was 79.7 and in Sept. it was 4.0? A PSA of 4 is usually when doctors suspect something might be going on. Sounds like the first one might have been an error. Your latest PSA number could be influenced by your ADT drugs, ADT drugs will drive the number down. Like Josephg asked, what was your Gleason score? Did the PET scan show any cancer spread outside of the Prostate?

    Dave 3+4

  • Trini2
    Trini2 Member Posts: 9 Member

    The Gleason Score was 4+4=8

    And it was done before they released I had a Kidney Stone.

  • Trini2
    Trini2 Member Posts: 9 Member

    The Pet Scan showed that the cancer was only in the prostate and no where else.

  • Wheel
    Wheel Member Posts: 200 Member

    Like Dave said, ADT is given to reduce PSA levels prior to Radiation. I really don’t have any idea how much and whether a steep drop going from a 79 to 4 would is normal or not. As said maybe the 79 was not accurate if such a steep drop is not normal. Likewise maybe the 4 is off. I would want to know how much of a decrease is expected. On a whole different note, knowing your cancer appears limited to within the capsule that could open up the surgery option to reconsider.

  • Trini2
    Trini2 Member Posts: 9 Member
  • Wheel
    Wheel Member Posts: 200 Member

    yes, a robotic laparoscopic prostatectomy. I just had mine 6 weeks ago. I am 71 and had Gleason 8 (4+4) core. It appeared contained in capsule from the PET scan, but when Surgeon got it, learned it had just barely left the capsule and he was able to get negative margins. Had nerve sparing, single port entry with also puboprostatic ligament sparing which helps considerably with incontinence along with Retzius sparing which also helps. I had very minimal leaking and gone after two days. Walking a mile a few days after surgery with my catheter in a bag. It also gives me the opportunity for salvage radiation if that were needed, that although salvage prostatectomy can be done, it is only by certain skilled surgeons.

  • Trini2
    Trini2 Member Posts: 9 Member

    Thank you Wheel for your experience, are there going to be any side effects that your doctor may have mentioned having your prostate removed?

  • Wheel
    Wheel Member Posts: 200 Member

    No. The two main side effects of prostate surgery are incontinence and ED issues. Today versus years ago, these are both minimized. That being said, you have to pick the right surgeon, even if it means traveling away from your locality for the surgery because their are different approaches to the laparoscopic surgery. There is single port entry (newer approach) versus three or four entry incisions. One will often hear about nerve sparing, but not the puboprostatic ligament or Retzius sparing( again newer techniques). Feel free to google these things, but the bottom line is you get to pick your surgeon and don’t hesitate to research the best prostate surgeon’s at the major cancer centers in your area or major hospitals that might have prostate cancer as a specialty area they are involved in.
    For me, it seems the first major side effect of incontinence I avoided due to I believe my surgery technique and am optimistic on the ED side, already taking a small dose of sildenfil (viagra) with the dose scheduled to be increased and I see and can feel things in the morning that seem to be awakening as the nerves heal.

  • Clevelandguy
    Clevelandguy Member Posts: 1,272 Member

    Hi,

    I have included a link for you to study, in brief, both various forms of radiation or surgery can have side effects from mild to severe. The best option is to get the best doctors+ best facilities = the best outcome. If it was me I would look at radiation or surgery, discuss with your Urologist and a Oncologist that specializes in Prostate cancer.

    https://www.cancer.org/cancer/types/prostate-cancer/treating.html

    Dave 3+4

  • Trini2
    Trini2 Member Posts: 9 Member

    Thank you so much for links, very helpful.

    I appreciate your feedback.☺️

  • Trini2
    Trini2 Member Posts: 9 Member

    Hi Everyone,

    I finished my radiation treatment last December and had my follow up appointment with my Urologist and my PSA is down to .1 which i was told is fantastic. I’m still receiving my hormone treatment to reduce my testosterone.

    Has anyone been taking XTANDI? It’s a new drug that they say helps with the treatment of the cancer as well?

    Wondering what are your feedback on it?

    Thanks.

  • JackWest
    JackWest Member Posts: 32 Member

    Trini2, so very happy for you! I am an older gentleman and fully relate to your joy. My results are very similar. Congratulations!

  • Trini2
    Trini2 Member Posts: 9 Member

    Thank you!

    Have you any feedback on the XTANDI drug?

  • Josephg
    Josephg Member Posts: 490 Member
    edited February 19 #16

    XTANDI is not a new drug, as it was FDA approved for PCa treatment back in 2012. As such, there is a lot of content on the Internet's medical sites that you can peruse to familiarize yourself with it. And, you can always discuss with your medical professional.

    I will note that XANDI is meant for treatment of "advanced" PCa, where PCa has evolved to become castrate resistant, meaning that it is now creating its own Testosterone and feeding itself. As such, the traditional ADT medications (Lupron, etc.), which chemically castrate the patient by eliminating the natural production of Testosterone, are no longer able to slow the growth of PCa cells.

    From what you have shared, in my non-professional, non-medical, opinion, I do not believe that your PCa has evolved to this advanced state, where this medication would be recommended/prescribed for you. Further, the side effects of XANDI are very similar to those common ADT medications (Lupron, etc.).

    I hope that this information is helpful to you, and I wish you the best of outcomes on your PCa journey.

  • Trini2
    Trini2 Member Posts: 9 Member

    Thank you Joseph,

    Great feedback, I’ve been approved for it but like you mentioned I don’t think that my cancer is that serious.

    But just doing my due diligence.

    Thanks again!

  • Josephg
    Josephg Member Posts: 490 Member

    The best non-medical non-professional advice that I can give to you is that you appear to be at the stage in your PCa journey where you should have a Medical Oncologist who specializes in PCa to take over and be the leader of your case. The Medical Oncologist is the most knowledgeable person on PCa treatments other than surgery and radiation, and they are also the most knowledgeable person on PCa treatments that are combined treatments of ADT therapies and radiation.

    After my failed surgery well over a decade ago, I had a Medical Oncologist take over my case, and I've been under the care of this Medical Oncologist ever since. We follow my PSA and various other metabolic markers, and when my Medical Oncologist believes that specific PCa treatment(s) are warranted, she assembles and directs a team to perform the treatments.

    For example, when PCa was found in my pelvic bone, my Medical Oncologist assembled a team consisting of herself and a Radiation Oncologist specializing in SBRT radiation treatments. Together they assembled and implemented a treatment protocol of SRBT radiation and 3-component ADT cocktail.

    Four years later, I am still in remission and I still meet with my Medical Oncologist every 3 months for a follow-up on my overall PCa health and my latest PSA and metabolic markers. Food for thought for you.