Interested in speaking to people have had the prostectomy and post op Hormone therapy and radiation

phooverjr
phooverjr Member Posts: 8 Member
in Prostate Cancer #1

I'm 54 years old. Diagnosed at 52. Had the prostectomy in July 2022. Only to find out ther was still cancer present. 0.22 PSA, followed up treatment with hormone therapy and radiation. Radiation ended in January 2023. My last hormone injection was February of 2024. Looking to connect with people have had the same path.

Comments

  • ThomASH_082562
    ThomASH_082562 Member Posts: 7 Member
    #2

    My heart sank reading your note…what was your Gleason score before your prostectomy? I hope the best for your treatment?

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited November 4 #3

    What is your current PSA? Did the radiation + ADT knock the PSA down to zero?

    PS: your situation, unfortunate as it is, is by no means uncommon.

  • Josephg
    Josephg Member Posts: 461 Member
    #4

    @phooverjr

    As Old Salt stated, your case is not uncommon at all. In fact, there are many of us here who have experienced PCa recurrence.

    I had a radical prostatectomy, and my first PSA test was 0.05. My PSA grew to 0.11 in a year, and I underwent hormone (Lupron and Casodex) treatments for 6 months, along with IMRT radiation treatments for 38 sessions and a total of 68 Grays on the prostate bed. At the end of the treatments, my PSA was undetectable.

    After 30 months of undetectable PSA (every 3 months), my PSA started rising again, and over the next 3 years, it rose to 0.98, at which time I had a PET scan, and PCa was found in my left pubis bone. I underwent hormone (Lupron and Zytiga and Prednisone) treatments for 2 years, along with SBRT radiation treatments for 3 sessions and 30 Grays on the pubis bone. At the end of the treatments, my PSA was undetectable.

    At 22 months after the 2 year hormone treatments ended, my 3 month PSA tests have remained undetectable so far, the most recent test result being last Wednesday. There is no question in my mind that PCa will eventually rear its ugly head again in some part of my body, and I will consult with my Oncologist regarding the best and most effective available treatments at that time.

    As you can see, for many of us, PCa is in fact a journey, and not a one-and-done occurrence. Managing quality of life along this journey become a primary guiding factor as the years go by. I wish you the best of outcomes on your PCa journey.

  • Wheel
    Wheel Member Posts: 163 Member
    #5

    joseph,

    Would be interested in you incontinence and ED side effects after your prostatectomy. How long in each for your seeing improvement and how much then on to your first radiation treatment and HT and what new side effects or worsening of existing side effects especially concerning rectal issues or urinary issues, and lastly on to your next royof radiation and further side effects. Thanks

  • Josephg
    Josephg Member Posts: 461 Member
    edited November 6 #6

    @Wheel

    Thank you for your follow-up questions. It shows your interest in the whole story regarding my PCa journey. I do have a few threads here detailing my experiences, and I will post the URLs, if that would be helpful to you.

    Incontinence - My instructions to my surgeon (2200+ robotic surgeries) who performed my prostatectomy was to focus on removing all of the cancer cells as my #1 priority. Anything else was secondary. As a result of my prostatectomy, I have been 100% vertically incontinent ever since, and I worked on the Kegels for over a year post-prostatectomy to the point where I think I could have cut a piece of rebar off with my anal part of the sphincter muscle, but nothing on the urinary side, before giving up on continence. I subsequently had an AUS 800 artificial sphincter implanted in me. Even with that implant, I have worn Depends ever since, and will do so until my last day.

    ED - I've been unable to sustain an erection ever since my prostatectomy, even though my surgeon was able to spare one of the two related nerve clusters. I've tried Viagra and Cialis without any success, and I have no interest in penile implants, injections or jellies. The reality is that I can still sexually arouse my wife without resorting to penile penetration, something that many couples in related situations do not fully explore.

    First Radiation Therapy - I was fortunate to have my IMRT radiation sessions first thing in the morning, so my treatments did not effect my work. I did not feel the effects of radiation, until the third week of treatments, when I suddenly felt quite fatigued, and I felt fatigued through the end of the treatments and the 3 months following, though it did not negatively impact my everyday life. One long term side effect that I attribute to the radiation therapy is that my bowel movements now occur first thing in the morning (used to have only one per day), and for the first bowel movement, there is such an urgency that I have less 5 minutes to make it to the bathroom, or I will poop my pants. I had a few bouts of Gross Hematuria in my bladder for the first two years after radiation therapy, due to inflammation of the bladder inner wall, but those symptoms subsided.

    First Hormone Therapy - I had all of the side effects from the hormone therapy that have been posted here on numerous threads on this topic. The only side effect that significantly impacted me was the hot flashes, as when one occurred, I would sweat profusely from my head, lower arms, and chest, such that I had to wear a head sweat band to stop the sweat from running into my eyes. These side effects went away about six months after the hormone treatments ended.

    Second Radiation Therapy - I've had no noticeable side effects from my 3 SRBT radiation sessions. A complete nothing burger.

    Second Hormone Therapy - I had all of the side effects from the hormone therapy that have been posted here on numerous threads on this topic. The one major difference is that following the end of the two year hormone therapy, my Testosterone level has increased only marginally, so my hot flashes still continue, even two years after the end of the hormone therapy. There is a good chance that my Testosterone level will never increase significantly beyond where it is now (38).

    Let me know if the above is helpful to you.

  • Wheel
    Wheel Member Posts: 163 Member
    #7

    Joseph,

    Thank you for sharing.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #8

    It looks like the originator of this thread hasn’t been back…

  • phooverjr
    phooverjr Member Posts: 8 Member
    #9
    https://csn.cancer.org/discussion/comment/1718733#Comment_1718733

    Gleason score was a 7

  • phooverjr
    phooverjr Member Posts: 8 Member
    #10
    https://csn.cancer.org/discussion/comment/1718755#Comment_1718755

    My incontinence is manageable. I was to a point where I didn't need to use any pads, then, I had the radiation and Hormone therapy, now I where a small liner during the day for incidental leakage. As far as ED, I haven't had an erection since before the surgery. (over 2 years now), With the hormone therapy, I have no desire, and it's extremely depressing. The worst side effect, is, I have lost so much strength and stamina, it's ridiculous. Climbing steps is difficult.

  • phooverjr
    phooverjr Member Posts: 8 Member
    #11

    Sorry, I've been really busy. So appreciate all the feedback

  • phooverjr
    phooverjr Member Posts: 8 Member
    #12

    Current PSA is undectable. <0.1, which I am grateful for, however, the treatment (hormone) has totally weakened by body. I struggle going up steps. If I try to work in the yard, I get winded in a matter of minutes. None of this was the case 18 months ago.

  • phooverjr
    phooverjr Member Posts: 8 Member
    #13

    Has anyone succesfully resumed a normal sex life after all of the treatments I mentioned? I just feel like this is as good as it gets and I won't get to have that kind of life again…

  • ThomASH_082562
    ThomASH_082562 Member Posts: 7 Member
    #14

    I'm scheduled for prostatectomy 12/2/24…Syracuse, Dr. Po Lam.

    After reading your stories, it saddens me to confuse…I do not have the endurance to fight a disease that the treatments castrate you, leave you incontinent, then add ADT therapy which strips you of who you are. I'm 62…if I am lucky to get back a sex life with injections, control of my bladder with some shields…combined with, hopefully 5 years—-Thank you God. It's horrible thought…I find I may have to seek counseling….and seek out a Dr. in Vermont that let me Die with some Dignity.

  • phooverjr
    phooverjr Member Posts: 8 Member
    #15
    https://csn.cancer.org/discussion/comment/1719001#Comment_1719001

    Believe me, I know how you feel. You feel less and less like a man. If I had it to do over, in my case, I would have refused the hormone therapy and took my chances. In the end, I'm just doing what I can to survive.

  • ThomASH_082562
    ThomASH_082562 Member Posts: 7 Member
    #16

    Thank you " phooverjr". This disease treatment can be taken care of all depending on where the cancer is, and what stage it's in. For some, 20years after treatment… cancer free. Others, get ready for horrible existence. Incontinence, ED, loss of who you are as a man…(ADT) bowel issues, toxicity issues, all as you physically/emotionally struggle, your loves ones struggle, cry—-and you can't protect them…I'm starting my challenge soon…we'll see what happens. I'm going to PennMed in Philadelphia to see if I could at least get in a clinical trail program…(maybe I could at least contribute to future study to rid men of this disease.) Then…sadly…find a Dr. in Vermont who will take me on to die with dignity when I'm 6 months away.

    Thank you again…all of you.

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