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67 yrs prostate 80ml median lobe enlargement

Mod - bad BPH symptoms for 1 year. 

Duodart for 6 months eased symptoms says full effects DDart takes 12 months no bad DDart symptoms

This week Uro confirmed prostate getting smaller but flagged procedure will ultimately be required.

Wants to assess in late March 18 if no improvement pushing to do TURPS.

Anyone had experience with Duodart

Know many people who have had TURPS  with no problem or concern of RE.

Is RE 100% outcome for TURPS

I am not sure on TURPS. If I maintain status quo will symptoms worsen. I have read prostate slows down is this correct?

Any opinions/options appreciated,

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  • Posted

    I was treated for Benign Prostate Hyperplasia/Hypertrophy (BPH) since 1990. In 2006 I was prescribed Alpha-blockers (Flomaxtra then Prazosin) 4mg a day. They still left some voiding difficulty and overnight necessities. Bladder capacity was shrinking. There was no consideration of the impact 9 years of Alpha altering of bladder neck/urethra muscles and nerves might have if a prostatectomy were to follow. I did not know that since 1995 urologists had known Prazosin would need an increase in its 4mg dosage beyond 2 years. By 2015 still no one had bothered to do the research. Pharmaceutical companies do all the research and they don’t if there’s no billion dollar benefit in it for them. When Prazosin became a little less effective and I requested an increase to 6mg a day Duodart was prescribed March 2013 to March 2014. Gleason Score 3+4=7 and Open Radical Prostatectomy followed in November 2015(at 72 years). A long and hard partial recovery and so far 2 years of incontinence followed. An emergency hospital botched blockage treatment then causing possible permanent bladder neck damage and months of self catheterising. My 25 years of PSAs never went above 3.8 (Apl 2009) and it was 2.41 (f/t38%) in July 2015 long after 5ARI affect on IT had ceased.

    Research shortly after RP alerted me to concern that Duodart may increase risk of high-range PCa. My then urologist said this only related to a different 5ARI drug and then only “serious” PCa “which yours isn’t”. It was serious enough for me. I have spent 2 years trying to get some answers. No one can tell me if Gleasons 3+4 progress to 8s and 9s or if they just become more aggressive 7s. If there are 2 different types of BPH with growth in number or size of cells. Duodarts’ Australian supplier discounts any increased risk from pre-release trials as a fault in the study’s design. There has been no attempt to redo the trial without this design fault. Our Commonwealth Ombudsman says only trial adverse side effects need to be recorded as such on information provided to consumers with the drug. Subsequent adverse effects do not have to be advised and therefore Urologists do not complicate their prescribing and cause any problem with sufferers “risk vs benefit” consideration.

    The Australian supplier of Duodart has reported 5 suspect “de-identified cases” of Prostate Cancer to our Therapeutic Goods Administration’s (TGA) Database of Adverse Events(DAEN) yet PCa still doesn’t appear in the side effects of Duodart’s Consumer Medicine Information supplied with the drug. TGA says drug suppliers are legally bound to report “serious” adversities to them but allow the company to report them without age, other medications or Gleason Scores. The only distinguishing factors are the company’s notification date. They could be anyone. Urologists are required to prescribe initial doses of the drug and appear to be the only source for any supplier’s fulfilment of their legally required reporting. Many urologists have decided not to let me know their feedback regime. The supplier informed me they reported my adverse reaction but submission dates indicate they did not.

    Dutasteride is supposed to mostly reduce prostate size by abnormal manipulation of its cells. My research has indicated that it mostly does this but it appears that when it fails to achieve this reduction it does something else. If the supplier can isolate their 5 mystery, suspected PCa from the rest of their user PCas I hope they didn’t have a way to do this ahead of our drug use. If you are having voiding and size reduction benefit you are likely on a winner others may not be. UK appears to have more locally readily available BPH treatments than Australia. Do the research and communications to ensure you don’t make our mistakes.

    Barrie Heslop

    • Posted

      Hi Barrie

      Terrifying journey you've had my God. I have found in my short road thus far that Urologists arrogant but I tend to put my faith in my Uro - mistake who knows. I ask direct question such as... "Is Turp 100% safe" reply is short yes - op takes appx 1 hr 2 day hospital stay and few weeks to settle down. Then final confirmation of reassurance "I've done thousands of these". I accept this on prima facie basis with no hidden truths because it is direct question. Same principle with prescribing Duodart.

      Now it was doing good for me improved flow reduced prostate but still up 2 or 3 times at night and urine retention appx 150ml. Uro says this is high but from my reading there is no datum for men over 65 eg some articles say at this age 150-200ml occurs and acceptable.

      12 days ago Just like that I noticed pressure drop off and greater frequency and today I ended up in emergency with melt down couldnt pass easy. Discovered only 170ml in bladder and would not catherterize and said dont worry it will settle down and it did but still weak flow and frequent. Doctors in a Public Hospital got it right and said that it was prostate decompensating for Duodart as prostate is volatile

  • Posted

    It would seem that many TURP Ops in the NHS are given to Senior Registrars to do before their next move up to Consultant and then they sometimes progress to removal etc. It is a small move on from doing Cystoscopy and taking Prostate samples and they take out a round part from the end of the Prostate to make more room for urine to pass through. In my talks with Consultants it is the only part of old men that grows !, but the risks of E/D and Incontinence depends on what is around your Prostate in that area which may get removed. I do wonder if once you have a TURP it allows the Prostate to float about, as late at night after sitting in my chair and getting out of bed in the morning I struggle to pass urine, stop / start and very slow, now I cannot self catheterise at night as can't get past my Prostate yet I can at lunchtime.   I am told it is essential when you have a urine infection to have your bladder totally empty when going to sleep as any left behind will multiply the infection. As I have said before for me I don't want another TURP every 2 years, so want it gone.

    One question for all is I have noticed when I have a catheter in I often have no infection and once removed infection is found which I presume is coming from the Prostate area as urine passes it. Think initially infection is picked up by catheter passing the Prostate and taking to the bladder.  Anyone noticed the same ?.

  • Posted

    Top88,

    Anyone had experience with Duodart     YES - 7 MONTHS - NO IMPROVEMENT AND QUIT

    Know many people who have had TURPS  with no problem or concern of RE.  NO

    Is RE 100% outcome for TURPS      PROBABLY

    I am not sure on TURPS. If I maintain status quo will symptoms worsen. I have read prostate slows down is this correct?  I THINK SO - BUT SOME MORE SLOWLY THAN OTHERS

    Good luck!

     

  • Posted

    I think Kenneth1955 is correct (see below).  Stay away from surgery.  Duodart seems to be working for you.  There are so many pharmacological interventions you can use before you consider surgery.  Why fire a cannon, when a BB will do the trick?
  • Posted

    My understanding is that RE is virtually 100% certain after a TURP. But it can have its benefits!
    • Posted

      Good Afternoon Pen.  Yes Turp is 100% for RE.  And yes some men think it is blessing but other men think it is a curse and give up on sex all together.  To each his own  Ken 
    • Posted

      Imagine a wife taking on that same attitude after having a mastectomy.
    • Posted

      I can do that but with a ejaculation why should you have to be forced to pick one or the other.  With a hysterectomy and a mastectomy they are a little different.  My X wife had a new breast put in.  Once they cut away your prostate there is no ejaculation and you can't get another one.  That will never happen to me.  If I get cancer of the prostate they will not touch me.  It will be there till I die.  We all do what we feel is right for our body  Have a good day  ken   

    • Posted

      My argument is not about reconstruction. It is about our relationships with our wives or S.O. To give up on sex because you can no longer ejaculate semen is the issue. That is the same as a woman saying that because she no longer has a uterus or ovaries that there will be no more sex. You would be ok with that? I doubt it. If she had cancer and she refused surgery because she didn't want her organs removed you'd be ok with that, too? We need to consider more than just ourselves in the decisions we make.

    • Posted

      Dale. Let me say this.  I would do anything for my kids and I did a lot for my x wife.  I stuck by her when she cause herself to have 2 strokes.  It was all in her head I had to take her to doctors and they even told her that.  She stopped going stopped working and stopped everything.  Our sex life was great.  We had 3 kids in 5 years.  In between my 2 sons she had a IUD put in she still got pregnant 10 times he had it removed it and that how we got my son.  Some women also give up on sex to AFTER SURGERY.  For me.  If I can't have a ejaculation sex is not sex.  I need that release.  I have had dry orgasm and they are nothing.  You may as well not do anything.  But That does not mean that I would not satisfy my wife or GF there are other things you can do other then intercourse just leave me alone .  My wife never had a orgasm through intercourse until I did oral on her and then she would have a couple.  I am going to live my life the way I want.  And if I don't want intercourse because it does not feel the same That is what I'm going to do.  No one is going to force me or tell be all will be the same when I know it's not.  Life goes on no matter how we live it.  Take care  ken

    • Posted

      I cannot speak for anyone because I have never experienced anything other than very minimal RE after my prostate procedure. In my case it isn't noticeable. I do, though, know men who have had procedures done that resulted in total RE and they still enjoy very healthy sex lives. Maybe they are the lucky few, but they are living proof that not all men who undergo TURP or GL come out of it washed up. The decision whether or not to undergo these procedures must be made between the patient, his wife or S.O., and his doctor. From reading your comments I see that you have very little confidence in doctors and that you believe that they have little regard for the patient's issues after surgery. In all my years I have never been seen by a doctor or surgeon who had that attitude. I don't deny that they are out there, but I don't believe they are anywhere near the majority.

    • Posted

      Dale  We can go on and on.  But when you come done to it it is up to the man after he talks with his family and Doctor.  I have great respect for my urologist.  I consider him my doctor and also my friend.  Just because he is a doctor and tells me what he think will do the best for me does not mean I have to do what he tells me.  I do not give full control to any of my doctors.  You do what I agree to not side track and do something extra.  You had a good outcome with your procedure and I am happy for you.  And there are men that go on and deal with RE and there sex life is good for them.  But on the other hand there are men that there sex life is damage and they don't feel like men anymore.  At 48 a friend of mine for 10 years was talked into having his prostate remove by his doctor and his wife because he had cancer.  The doctor told him there should be no change that being he's young he should bounce back in 6 months.  After being push into it being called every other day that he has a opening he had it done.  For him it was a death sentence.  The only way he can have sex is if he give himself a shot in his penis. He told me that i does last about hour but for him to have a orgasm it take's him 1 1/2  hours and he told me it's not worth the time. ( The doctor told him that he did nerve sparing )    He give in to his wife 2 times a month to make her happy but after he pleases her he goes to sleep.  He has told me many times that he wish he was died.  No one should have to leave like that.  I try to be a good friend and talk with him  I have him thinking about his kids.   Will I am not going to say anything more on this we have to live our own life not someone else's It is our decision to make how we live our life and what kind of procedures we have.  If TURP was so great and men were so please they would not have come up with any of the others procedure to pick from.  God Bless you all  Ken 

    • Posted

      Naturally Kenneth I agree with you. I consider prostate removal analogous to a women having a mastectomy. I also consider a Focal Ablation (FLA) analogous to a lumpectomy. This procedure changed breast cancer surgery for women and gave them back their lives and dignity. FLA is very similar in the fact that it is very focused in the tissue removal. It is down to one mm in accuracy. 

      I can't understand why it would not be a first attempt by any man. If they can accurately remove the specific tumor in the gland without sexual side effects then it is a no brainer for me if I have PCa. It has been highly successful in PCa and it is how they determined that the tissue removal removed the BPH symptoms at the same time. It is now being done successfully in cases of Gleason scores of 8.

      And no sexual side effects. 

    • Posted

      Thank you John.  What it comes down to is.  A doctor can tell you what the problem is and tell you what may help you but you don't have to take it.  It is your choice to pick any surgery you want.  I am so happy I have my doctor.  We have talks all the time.  He has told me I keep him on his toes.  We are able to talk about everything.  Not many will do that.  I feel that god gave us the ejaculation not just to have kids but for our pleasure also Take care  Ken

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