The next "Step" after robotic prostatectomy

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NDFarmboy
NDFarmboy Member Posts: 1 *
edited August 2023 in Prostate Cancer #1

Good Day. I'm 64, and had a robotic Prostatectomy in Oct 2022. The Dr was confident all cancer was encased in the gland, but the 3 month PSA check was .29. Next PSA check 3 months later was up to .65 so a PETScan was scheduled. A tiny hotspot was on the Prostate bed, and Dr. is recommending radiation treatment. I am looking for feedback from others who've been through this process already, and what I can expect for long term issues. I'm not worried about the side effects that occur during the treatment and for the brief time after the treatment is completed. I'm wondering what "falls apart" 5, 10, 15 years down the road. I'm also wondering about alternatives. From family experience, I'm not overly excited about radiation being presented as the "best" option, so I am doing research on the best course of action for me.

My Gleason score was 4-3.

On a side note... I'm suspicious the cancer cells from the prostate were transferred to the bed during the biopsy procedure...

Comments

  • eonore
    eonore Member Posts: 182 Member
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    Hi,

    I had RP in October, 2017. By August, 2018, my PSA was climbing, and in the spring of 2019, I had salvage radiation and six months of hormone therapy. I am now four years out. In terms of long term side effects, the radiation has had the least long term consequences. My RP had lasting side effects, and I never totally recovered from the hormone therapy. Don’t get me wrong, I am thrilled to be cancer free, but compared the the others, radiation is a walk in the park

    Eric

  • Old Salt
    Old Salt Member Posts: 1,398 Member
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    The proposed treatment is Standard of Care, AFAIK.

    The radiation sessions are very short, but there's a pretty strict protocol about having a full bladder prior to each radiation session. I personally wouldn't worry about things that may (or may not) happen way down the road. In that context, Eric gave you good advice (see the post above).

    Carpe Diem!

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
    edited July 2023 #4
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    Hi,

    In my humble non medical opinion the radiation treatment is a good treatment path. Cyberknife or Proton radiation would be my choice. A PET scan is good for finding small metastases, your doctor made a wise choice. None of us know once treated via radiation or surgery if the cancer will return. With that being said the only pro active thing to do is follow up with your doctor and get your PSA checked on a regular basis. Cancer returns, look to zap it with radiation or some other form of treatment and keep on living. All of us survivors live one PSA test to the next. No long term treatment paths that I am aware of that will guarantee cancer free 10-15 yrs. down the road. I had my Prostate removed via robotic surgery in 2014, so far PSA has been below .1 🙏🤞

    Good luck

    Dave 3+4

  • On_A_Journey
    On_A_Journey Member Posts: 111 Member
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    Hello NDFarmboy,

    Your situation is very similar to mine. My first PSA test a few months after surgery in 2015 was 0.53 and my next was 0.75. I began radiation shortly after, 33 sessions, but did not have hormone therapy with it. My Gleason was 3+4. My urological surgeon, before handing me over to a radio-oncologist, described post-surgery radiation as a mop-up procedure. Pretty good description, I think, and standard practice.

    I wasn't completely continent before I started radiation, but I was well on the way. I was told that whatever level of continence I was at, it would never improve beyond that, and that's true, I never became completely dry, but until a couple of years ago I was down to just one flimsy shield a day and I was dry overnight. I'm much worse now but I can't and won't blame that on the radiation itself; it was too long ago. I also had a certain level of ED before surgery and radiation did not worsen it.

    The reason that they say to front up with a full bladder is that it pushes your bowel out of the way a little bit, preventing some irritation to it and reducing the severity of loose motions which persist for a few months after. Or so I was told.

    If anything has 'fallen apart' for me, and it is now 7 years after my radiation, is that I have what's known as a biochemical recurrence; my PSA is now 0.51 after reaching its nadir of 0.04 five years ago. Happens to 30% of those after surgery, apparently.

  • Tim4plus3
    Tim4plus3 Member Posts: 7 Member
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    What type of hormone therapy did you receive? I am facing the RP v. radiation decision right now, and the radiation oncologist has suggested a 5 week course of ORGOVYX before starting IGRT, then seed implant

  • Old Salt
    Old Salt Member Posts: 1,398 Member
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    It is common to have a course of androgen deprivation therapy (in this case Orgovyx) prior to radiation therapy. There is synergy between the two:

    Adjuvant androgen deprivation therapy for prostate cancer treated with radiation therapy - PMC (nih.gov)

  • eonore
    eonore Member Posts: 182 Member
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    I had a single six month Lupron shot. A few weeks later I had thirty days of Casodex.

    Eric

  • Old Salt
    Old Salt Member Posts: 1,398 Member
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    Usually it's prescribed the other way around; Casodex first then Lupron (to prevent Lupron flare).

  • eonore
    eonore Member Posts: 182 Member
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    You’re right. In my case, Dana Farber was cleaning up my earlier hospital’s mess.

  • brevp
    brevp Member Posts: 2 Member
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    NDFarmboy,

    I hesitate to post this because it sounds a bit dire, but my radiation after RP included 45 Gy in 25 fractions to the entire pelvis, including lymph nodes followed by a 25.2 Gy in 14 fractions boost. Hormone therapy before, during, and after. Few complications during treatment but It was soon made clear that I suffered radiation cystitis to the bladder wall resulting in urine leakage, burning, blood in urine, and clotting. Prostate bed pain developed two months after treatment and lasted for about 6-8 weeks. Almost four years later, scar tissue blocked flow through the urethra and had to be cut away. This scar tissue was from the burning caused by the radiation. This left a hole in the urethra and complete incontinence to prevail.

    Another 3 years later and I am struggling with peripheral neuropathy and loss of balance due to tiggling and numbness in the feet and lower legs. Suspect scar tissue impinging on nerve bundles or actual nerve damage from the radiation.

    My post RP PSA stubbornly sat at about 1.5 which resulted in radiation/hormone therapy recommendations. And while my current PSA remains at <0.01, knowing what I know now, I might have waited a little longer before making the decision to have the radiation accomplished.

    It's a tough choice to make. I would be interested to know how much radiation to the pelvis is too much radiation...

    Brevp