Very pleased with outcome

Posted , 10 users are following.

I had my first annual review yesterday after deciding on EBRT plus hormone therapy for a 4+4 diagnosis. I must say that the side effects have been minimal - very few problems with incontinence and some ED that is resolved with Viagra - which is not always needed. My PSA has come down in the first year since treatment from 2.5 to 0.4 (it was nudging 10 prior to treatment). I am 58 years old and have not missed a day's work although going to the hospital 5 days a week for 7 weeks was a bit of a chore. Apart from 6 monthly PSA tests I have mentally put it all behind me and would heartily recommend the path I have taken. Good luck to all

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  • Posted

    Hello David,

    Very happy for you. EBRT is radiation treatment?

    I have had a nerve sparing radical prostatectomy 2 months ago. PSA was 4.6 and (4+3). No problem of incontinence, haven't tried sex yet.

    Doctor will check my PSA in 6 weeks from now, esp that mine was marginal not encapsulated inside the prostate, so if some prostate cells were left, this would show PSA>0 and could require radiation, and I am so scared of just the thought.

    • Posted

      Yes, EBRT is External Beam Radiation Therapy and there are many different types out there. I wish you well for your check and your figures give you reason for optimism.

      ?Do not be scared of RT. I do hope you do not need it but, if you do have any 'escapees' then RT is nothing to fear.

      I wish you all the best.

       

    • Posted

      In case the six weeks PSA is greater than zero, which was my experience, you should,retest the PSA say three months later.

      if the PSA rises then you may need radiation, but insist on a PSMA PET scan before any radiation is performs. 

    • Posted

      I wish I had opted for it instead of RP, but my doctor didn't put the option for me.

      Maybe I should have educated myself more, but time is never on your side and the scare was too high... too late now.

      Thanks again David. Very reassuring and comforting.

    • Posted

      Ayman if your PSA in 6 weeks after RARP is greater than zero, as is my situation, you may be prescribed radiation.

      I had SBRT in three sessions. No side effects, no pain. No anything. No improvement in PSA. Was recommended hormone therapy. I am not rushing into it.

      If radiation fails for you, don't rush into hormone therapy.

  • Posted

    Thanks David for the positive message, much needed, and happy for you.

    Will send you a pm.

  • Posted

    david,

    I am 7 weeks past EBRT, I had no hormone therapy. My PSA at 6 weeks was 2.07, almost same as yours at 2.5. My side effects were tolerable, although fatigue was bothersome when I did physical activity.

    At 7 weeks I am just about free of side effects. I am looking forward to annual check up and hoping for a PSA as good as yours.

    At diagnosis my Gleason was 4+3.. PSA 6.86.

    I like your positive attitude, mine was not as good during treatment. As I begin to heal my attitude is healing also. I was on AS for a year before treatment, and now that I have the treatments, side effects behind me, I am glad I chose treatment.

    Roger

    • Posted

      Me too. I agonised for well over two years whether or not to have treatment but my PSA was only heading in one direction. I am posting this to show others that there are very few side effects to EBRT (apart from those I've mentioned and the initial fatigue) and I feel I have made the right choice. No regrets.

    • Posted

      Roger, I am glad to hear that you are doing well. I remember when you were going through some of the side effects and you were questioning your decision for treatment. I guess we all go through that thought as I did too. But now that side effects of gone, and we are cancer free - we know the decision was good to get treatment and not have to worry. It gets better. - Charles
    • Posted

      Charles,

      Great to hear from you! Yes, during treatment I was thinking I should have continued AS. But, now it is over and getting my life back I am looking in the rear view mirror.

      Charles, I am grateful for all the support you gave me. I am most appreciative!

      Roger

  • Posted

    An interesting discussion. I think the reason I chose RP was my fear of the side effects of EBRT - especially severe rectal problems up to 2 yrs later. You guys seem to be really happy with the side effects once into recovery mode and notably you seem to have retained full erectile function! What do your oncologists say about possible long term effects (ie side effects that begin to ocurr after a year or two?). Are those things of the past when the technology was somewhat cruder or are they still to be expected?
    • Posted

      To all. Great discussion. I evaluated both options and went RP. I am 2 months post op RP. I will have my first PSA in about 3 weeks. I feel confident of the results but you never know. I was pre op 4\3 Gleason and 8.8 PSA. I am having issues with urinary incontinence, but thanks to these discussions I am reassured patience will be prudent.
    • Posted

      Richard, i'm 4 months post RP and was 3/4 Gleason and 5.6 PSA - Continent by 5 weeks post op but occasional small leaks. I lost my lefthand neurovascular bundles and erections with the help of viagra are just good enough for penetration for at most 10 minutes... as you say patience is needed!!

    • Posted

      The american Urologist John McHugh compares treatments on his website and says that RP is like hitting a road bump which shocks you at first then gradually improves whereas RT is slower to develop. After about 2 years the side effects are roughly the same - incidentally, when he was diagnosed with PCa he opted for RP. I recommend a look at his website - Prostate Diaries. I opted for RT because the tumour was very close to the edge and there was a chance some had escaped. Also, RP seems more variable in its outcomes - some have very few problems whereas others have more serious problems.

      ​The purpose of my post was to reassure those who choose RT - I am genuinely surprised at how mild the side effects have been.

      ​I will post after another year but the first year has been relatively problem free.

      Good luck to all

    • Posted

      Hello Romney,

      Thanks for sharing. This is very re-assuring, as my conditions are very similar to yours - gleason 4+3, PSA 4.6 and now 2 months post nerve sparing RP.

      Just like you, perfectly continent except for the occasional drop.

      Haven't tried sex yet, have been prescribed Vivanza (Viagra like but long acting 10 hrs and lesser side effects O was told). Doctor said in the case of sex, the earlier I start, the better chances of recovery I have. He also said he cannot guarrantee that I would ever be able to have sex without a pill (maybe yes maybe no). However, and forgive me for asking this, my greatest concern is leaking urine during intercourse.. this is what's keeping me from even thinking of sex. What has been your experience?

      Thanks, Ayman

    • Posted

      Leaking has not been a problem for me. I had a time where there was mucus in my stools which made farting a bit tricky but this seems to have resolved. Time is the great healer.
    • Posted

      Yes, time is the great healer indeed.

      I admit that farting is also tricky for me... big chances of leaking... can't seem to quite be able control it yet.

      Cheers

    • Posted

      Thanks David. I shall check that out now. I suspect I might have made a different choice had I read this conversation prior to my op smile

      I look forward to your yr 2 report!

    • Posted

      Occasionally I squirt urine like an ejaculation smile it's a small amount and my wife has no problems with it. You could always wear a condom.

      PS if I pee immediately before there is no squirting at all, and mostly even if I don't pee first, I don't squirt!

    • Posted

      David,

      A question on Flomax, are you taking this med for urination, or if you ever did.

      I stopped tsking It for a few days, but had to go back taking it. Altough Urologist gave me a new prescription. Alfuzosin.

      The Flomax was causing lower legs burning and itching. Alfuzosin has helped the burning and itching. I would like to stop this medication, but not possible now. Pee like a race horse taking it, without it, back to weak stream and dribbles.

    • Posted

      I am fortunate in that I have never had an issue with urination.

      All the best

    • Posted

      Roger, I was taking Flomax too. At one point, I had to take two a day. One in the morning, and one at night. I had to do that because at night, I had a very weak urine stream... sometimes when I would get up at night to go, I couldn't finish. I knew I needed to go more, but it wouldn't come out. I found that if I walked around the house a little bit, I could finish. So I went to the urologist about that. He said to take two Flomax a day for a whiile. I did that for maybe a month or two. Then I cut down to one a day... then one every other day for a week. Things seemed okay, so I stopped taking the Flomas all together and I've had no problem since then. So I would think eventually you'll do the same and be off the Flomax. - Charles

    • Posted

      Thanks Charles, Sounds like a plan, I will give it a try, I would very much like to stop taking it period! I will ket you know how it goes.

      Roger

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