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Am I pretty much doomed to wearing diapers for the rest of my life?

Posted , 19 users are following.

brad97862
brad97862

Hello, I’m generally a pretty healthy 63 year old. just found out that I have prostate cancer from my GP. I see the specialist next week. I’d like to be armed with information before talking to him. I moved to New Zealand from NYC 23 years ago where most use the public system, but if one has insurance or a lot of money private is available. 

 My biopsy read 2 (out of 12 cores) both with a 3+4 Gleason score.  My PSA has been at 3.9 and 3.7. I have no family history of cancer. (Indeed most live fairly long – my mom a smoker until 93 live to 94,; my Dad also a smoker, who was 68 when I was born, lived to 80, and his sister 101.)

My question is: am I pretty much doomed to wearing diapers for the rest of my life with normal treatment? A friend, who also has PC (with slightly worse Gleason readings) insists that incontinence and impotency are almost inevitable. He’s been to support group where 18 out of 20 were still incontinent…though it could be a skewed group since the ones happy with treatment probably aren’t there.  He won’t get treatment and is using Active Surveillance, a lot of exercise and a strict diet.

The publicly available treatment here in NZ are radiation and surgery. Brachytherapy may have recently been made available publicly, but I’m not sure. Nanoknife surgery is available privately.

I'm pretty active. I exercise every day and go tot the gym in early retirement. Leakage could put a big damper on my life. Any suggestions?

0 likes, 23 replies

23 Replies

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  • barney34567
    barney34567 brad97862

    Posted

    Hi Brad

    Me: 52, G9 went thru radical surgery, one week of high dose radiation, 7 weeks of regular dose radiation and now on ADT (Zolodex).

    I had leakage for 4 mths (wore diapers) after surgery and then it settled down. 95% of folk settle down between 3-12 mths. No more than 5% I understand have incontinence issues for the rest of their days.

    Small incontinence issues with radiation. No incontinence issues with ADT.

    In my experience, how one responds to treatment (including if one becomes incontinent) is partly up to your anatomy and a lot up to the surgeon's skill and radiographer's experience.

    Food and exercise are somewhat important in my experience during and after treatment. Not so much before.

    BTW, what did the pathology say regarding the tumour? Was it T2, T3 etc?

    Was perineural invasion present? 

  • brad97862
    brad97862

    Posted

    Hi I read most of the new edition of DR Patrick Walsh's seminal book "Guide to Surviving Prostate Cancer". It was excellent. I have a surgeon who will do it in the public sector in a few months. He is young, not hugely experienced, but by all reports exceptionally talented. All's they know at this point is that its 2 3+4's in 2 out of 12 cores. The PSA was 3.9 but they found it digitally. 

    • glenn77
      glenn77 brad97862

      Posted

      I ended up incontinent as the result of a Greenlight Laser procedure for BPH, not cancer.  It was a depressing situation for nearly two years, but i was finally able to have an artificial sphincter implanted.  So, I went from 6 to 10 diapers per day to 0.  So even for a worse case outcome, there is a way out of the woods.
  • JktaPablo
    JktaPablo brad97862

    Posted

    Brad. I had my prostate removed July 2 by robotic surgery. My biopsy indicated a Gleason 9. I'm now in recovery stage. I have good and bad days re incontinence, but I'm hoping to beat it within a month or 2.  Keep up the pelvic floor exercises. Erectile dysfunction is another issue.  It will take longer.  I'm currently using drugs and the pump to keep the blood vessels and muscles active. Nobody really seems to know how to get it back - it's all guess work, if you ask me.

    I've started a blog to track what happens to me - maybe others will be interested.

    prostaterecoveryinbali.blog  - have alook if you have time

    I live in Bali.

    Don't give up - it's better to be alive.

    Paul

     

  • gary16962
    gary16962 brad97862

    Posted

    Hi Brad

    I started with PC in 2008 gleason score 3+4 PSA 12.5  TC2 prostate removed in 2010 no incontinence PSA began to rise in 2014 so had radiography still no incontinence.

    Psa is now 3.5 and I have started hormone therapy no side effects and am starting chemo in 3 weeks time.

    PC can be a very slow process im now 65years and intend living a lot longer.

    I play golf etc so stay positive and well good luck Gary

  • mark_fastco
    mark_fastco brad97862

    Posted

    I had my prostate removed in 2016 I wore a pad for two weeks after the surgery and that's it. For the next year I had to be careful about when I went to the bathroom how often Etc. I had no incontinence issues to speak of and I have none now. However I do need help with erections but with help from penile injections I have a healthy satisfying sex life. So if you decide to get the prostate removal after getting all the information you need... That is my story. I don't like the fact that I need to get help getting erections but I don't feel doomed in any way. I hope this helps you

  • barrie62598
    barrie62598 brad97862

    Posted

    Hi Brad!! Probably a bit late to hit this site but apart from age you seemed close to my earlier situation and I wondered what you chose and how it’s going so far. I was treated for BPH since 1990 age 47. Alpha blockers and 5ARI drugs led to 3+4 Gleason (contained) and RP in 2015 age 72. My Urologist was a surgeon and led me down that path. I was told I may have some incontinence for a few months. Now three years post-op he says it’s likely to be life long. There was no time for pelvic exercises pre-op and many months post-op have not been much help. Sitting and lying OK but up and active no feeling dripping goes on and on.

    I’m a type 2 diabetic and a little overweight which Uro says is relevant. I was the same pre-op. I think the many years of medicated relaxing internal sphincter for BPH may not be much help post-RP.

    I thought I was getting RARP as my surgeon was an expert but didn’t know my city, Newcastle NSW, didn’t have any such equipment. This may be relevant as could have been the Emergency hospital’s botched bladder neck scar tissue treatment.

    I only had the option of removal or radiation but of course I could have opted for AS. My current urinary situation is just as bad as pre-op or BPH years. There’s also the loss of manhood which has no practicable consequence but pretty severe psychological issues. They do not know the full function of the prostate or the bits lost with it. PCa cells can still spread to organs and bones even after its removal. So its all sort of like Russian Roulette and hoping your chamber is empty.

    Barrie

  • glenn77
    glenn77 brad97862

    Posted

    Have you asked your doctor whether an Artificial Urinary Sphincter (AUS) implant is a possibility?

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