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Robotic Simple Prostateomy for BPH?

Posted , 12 users are following.

Howard31850
Howard31850

Hello everyone,

I am new to this thread and have read many of your posts. I do need your advise for my problem. Thank you very much. Here's a quick summary of my BPH journey.

I am 67 and have had BPH for 20 years. I've had 3 biopsies over the years, the most recent was 2011. All were negative. I've been on an alpha blocker for 10 years and was on Proscar for 5 years and am now on Avodart since 2011. Last fall I had 2 "liquid biopsies", one was the MiPS urine test and the other was the Apifiny blood test that looks for autoantibodies to PCa. Both tests were extremely low for PCa risk so I can say that I am hopefully clear.

During the past 15 years my PSA has fluctuated between 4 and 15. Currently it is about 11. In 2011 my prostate size was measured at 150 gm. My urologist here in Ontario will only offer me Turp or an open prostatectomy.

My symptoms are the usual ones . A few weeks ago I travelled to another clinic to measure my prostate size (TRUS) and was surprised it had grown to 280gms. The bladder and kidneys still looked ok but showing the usual signs of stress. (My own uro here just yells at me when I suggest alternative solutions or diagnostics).

The uro who measured my prostate a few weeks ago said there was a large median lobe. He does robotic simple prostatectomies (SP) and offered me that. But last week I had the opportunity to see another local uro who also does robotic prostate procedures. He did a cystoscopy on me ( my first ) and said I had NO median lobe and would not benefit from a robotic SP. He said my prostate was very long and extended along the urethra in the transitional zone region. He said my bladder looked ok. It was interesting to watch it all.

So this urologist gave me a referral to another uro who does GLL. But this procedures worries me as I have read terrible accounts of its side effects on large prostates ( over 100gm ) due to extensive heating of the surrounding tissue due to the long procedure time.

I did contact Dr. Gat in Israel a few months ago about doing his procedure but he said the largest prostate he has done was 200gm. At the time I thought I had a large median lobe obstructing the bladder neck so he declined me. He also said it could take over a year for me to benefit from his procedure and I needed something sooner. I guess it saved me a lot of money but I have read his papers and the personal stories here and believe in it.

I also wonder about the PAE procedure. I have read some of the accounts here that seem promising. Maybe a 30% volume reduction for a very extended prostate would really help me? I don't know.

I've also looked into HoLEP but the potential for a dramatic reduction of quality of life is very scary for me. I also read about REZUM but it seems to be for smaller prostates. But maybe I could benefit from this procedure given the extended nature of my prostate? It seems that for a given prostate mass there are many different geometries and maybe some of these shapes are not disqualified while others are disqualified from certain procedures?

So now I don't know how to proceed and am very confused. The Holep surgeon I spoke to said it was "criminal" of my own uro to consider Turp on such a large prostate as I would be in surgery every 6 months. But another doctor told me that I am much too big for Holep as well and they would have to open up my abdomen to remove the enucleated tissue. And so on and so on.

This forum has so many smart people - can anyone offer any suggestions? I know I am sitting on a ticking time bomb and need to do something but don't want to jump at some procedure that could leave me with a worst problem for the rest of my life.

One last point: last summer I had an asthma attack and was given a 5 day supply of prednisone tablets (50mg). It was unbelievable! After 3 days I started peeing like I did in my 20s. I even set up a target 10 feet away and could hit it! All my BPH symptoms disappeared for a week - I never felt so good! I know steroids are very dangerous and are not the answer but it did demonstrate the inflammatory nature of this disease.

Thank you very much for reading this and any advise you offer me. I wish you all the best with all your own issues.

 

1 like, 60 replies

60 Replies

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  • derek76
    derek76 Howard31850

    Posted

    I can only say that you got yourself into this situation by leaving it for so long especially when it was obvious that meds were not helping you. I would think that with such a massive prostate that open prostatectomy was probably the option.

    I had GL for a 75gm prostate in 2005 when I was 71 and life was back to normal on the second day. It regrew to 135gm as prostates are like weeds. I then had Thulium/Holmium laser surgery in 2013 that took away 85gms of tissue. That recovery was also as it shoud be apart from retro that had already started due to time on tamsulosin. It seems that in the UK we have more options than Canadians.

    This week NICE have made Green Light XPS the treatment of choice over TURP.

    • Howard31850
      Howard31850 derek76

      Posted

      Thanks Derek  you are very correct that it went on too long. I asked my uro each year to please check my size but he refused. So I drove to Detroit last month and paid for an u/s and was shocked. The lesson for me  is to be proactive and not so passive with the doctors.
    • derek76
      derek76 Howard31850

      Posted

      I was living in Scotland as my prostate was growing and was offered TURP in 1995. Like you  turned it down as I felt that Laser options were not far off. They did take some time although there was an early  Holmium version around that I turned down.

      When GL reached our shores in 2004 I set out to get it and contacted an English hospital doing it. However our NHS is divided into areas and I had to fight to get the Scottish hospital to pay for the procedure over the border.

       

  • derek76
    derek76 Howard31850

    Posted

    PS.

    The surgeon who did my Thulium/Holmium laser procedure told me that the biggest he had done was about 300grms.

    God knows how long that took him as he said that mine had taken him nearly three hours in total and that I had ruined his back:-)

    A previous Uro I had took early retirement due to back problems.

     

  • PAEgreat
    PAEgreat Howard31850

    Posted

    Your journey is certainly unique and reinforces my thinking that we don't really understand all the causes of the various symptoms.  Everything is labeled BPH and given a set of treatment options: meds and TURP.  The effect of Prednisone makes it sound like the prostate is inflamed mostly, rather than having grown larger or possibly both swollen and enlarged.  Have you been tested for infection or put on antibiotics? 

    If your doc yells at you when you want to explore all options, find one who's willing to assist you in finding the best option based on your personal situation.

    With the size and shape of your prostate it might be difficult to reach all the blood vessals involved in one proceedure - might take more than one.  The good thing about PAE is that it's not going to limit your other options if there's no improvement following PAE. 

  • mcgillvn
    mcgillvn Howard31850

    Posted

    Stories like yours make me realize my problems are small in camparison.  I think I recall mine at 90 gm, and even though there are symptoms, it's only in the recovery from surgical anaesthesia for other issues that I had to admit it had to be confronted, before it became such an obstruction without the side effect from anaesthesia.  I was offered a half dozen potential treatments, rejected the drugs immediately after an earlier experience, and decided to try a urolift.  I have NO idea whether it's even an option for your situation, but my experience so far (2 weeks or so since, at ths point) has been pretty good, slept through the night last night, post-op discomfort gone, all signs looking good.  It's only been out there for a couple years, try to find someone to advise you on its efficacy for your situation.  Best wishes!
    • Howard31850
      Howard31850 mcgillvn

      Posted

      Thanks to everyone for your kind wishes and sharing your experiences.

      Here in Ontario I can only change my uro if my family doctor agrees which is very rare - so we are stuck with what we get and the procedures they offer. But I can travel and pay cash ( to a point ) if it will save me from a major surgery and its consequences.

      I have never had a UTI (till now) or a prostate infection but wanted to see Dr. Nickel in Kingston who is a leading expert in the field. But I could not get a referral. I think BPH may start with an infection when we are young and then progresses to an autoimmune state over the years where the inflammation takes over. That's how I interpreted my prednisone experience. Also it seems that Avodart has not helped me which means in my case the BPH may not be hormonal - just a guess.

      I've looked at Rezum, urolift and HIFU but was rejected. I have thought about PAE and Holep in the US. The transurethral procedures scare me which is why I had thought of the robotic simple prostatectomy which makes 5 little incisions in the abdomen and then scoops out the prostate tissue while leaving the urethra alone as well as the prostate capsule. But I don't know anyone who has had it for BPH.

      Thanks everyone.

    • derek76
      derek76 Howard31850

      Posted

      It seems that in Canada your choices are even more limited than ours on the NHS.

      A relative was married to a rich Canadian and any surgery he needed including his prostate he had in Florida during their Snow Bird breaks.

  • mcgillvn
    mcgillvn Howard31850

    Posted

    I was advised by GP interns in a teaching clinic to avoid avodart, they said that experience indicated the -'s exceeded the +'s .  They merely ratified my subjective experience after a few months.  But after reading many of the blogs here, it's clear that we need to be responsible patients, engage with our Urologists, and keep researching.   Like everything else today, the technology keeps improving. Everybody's case merits professional evalutaion, there is no magic bullet, no standard anything, and there are too many factors to rely on anything less than well-educated evalutaion.  When in doubt, get another opinion, and pay attention!
  • kenneth1955
    kenneth1955 Howard31850

    Posted

    Neil I'm so sorry that you are having a bad deal with this.  Did you talk with your urologist about the out come when you were taking the prednisone.  Maybe you could take it every other day or so.  I would look into to it. It did seam like it helped you.  Also who are you going to believe every doctor told you diffrent things.  Look into PAE and see if you can do that you would give you some relief and it has less side effect.  Please just get all the information before you do anything  Ken
  • glenn77
    glenn77 Howard31850

    Posted

    Whichever route you, and others choose, make sure your urologist has a lot of experience with the technique he or she employs.  Over three months ago, I was scheduled for TURP surgery by a doctor who is highly experienced urologist.  At an earlier visit, Green Laser was mentioned as one of the options at the large (12 or so urologists) practice in our area.  I decided on TURP, it was scheduled, but the week before the surgery date, I called to ask his nurse if GL was a possibility as the low level of bleeding seemed like a positive.  I got a call back the next day, and was told that they could do the GL procedure; so I went that route.  The Foley cathether was removed the next day.  I was told the procedure was limited to creating a pathway through the median lobe, the one that had grown the most.

    I had a lot of swelling in the perinium, and a couple of days later on Saturday night, I ended up totally unable to pee, and ended up in the ER and left with another Foley which I kept for another five days.   I learned to do a self catherization (Thanks, YouTube) and acquired the necessary supplies.  Turned out to be a good move, as I had a few more instances of acute retention, and self cathering got me through the crisis.  

    I never regained any bladder control, with a mix of symptons.  A cystoscopy exam about 7 weeks post GL showed all sorts of attached residue and inflamation.  So a second procedure was scheduled and done using Gyrus TURP technique.   It's now over a month past he second procedure, and I'm still totally incontinent.  So for over three months now, it's been either 5-8 Depends per day, and then maybe a Cunningham clip to keep me halfway dry during an errand.  Or, sometimes, I resort to the "Texas condom and bag" to see a movie or play.  Going to visit our children and grandchildren requires flying, and that's totally out of the question.

    I'm guessing my doctor hadn't done many GL procedures, and was just accomodating my request.  Hopefully, I'll recover some level of continence so day.  So again, make sure you're doctor is highly experienced with the procedure he uses.

    • derek76
      derek76 glenn77

      Posted

      When I had my GL PVP in 2006 it was part of a trial prograame and I was my Uro's 8th patient. I had total faith in him and it was justified. Catheter out the next morning. It then took me about six hours to pass any urine and it came out quite bloody. Less so as the day went on to a rosy colour with a spurt of blood at the start and a bit of burning pain. As I was still retaining quite a bit they kept me another night until I was voiding OK  as I lived a two hour train journey away.

      Basically apart from initial spurts of blood, some stinging and the odd clot life was back to normal on day three and I went to the races and by the end of the afternoon was surprised that despite two large  coffees I had not been to the toilet for over three hours. .

      No urgency, no retention, no retro but my flow was not as good as I had expected but much better than before.

        

    • Howard31850
      Howard31850 glenn77

      Posted

      Thanks Glenn for your important advice. I am very sorry to hear about your problems with GL and hope  you heal quickly. Your warnings also extend to doctor's who prescribe drugs w/o understanding their side effects and interactions. Most doctors do not like being questioned especially when accompanied by Internet info. But we just have one life whereas they have many patients. Thank goodness for the internet and forums like this one. All the best to you.
    • glenn77
      glenn77 Howard31850

      Posted

      I would like to make the board aware of a great website that has a lot of good information about the prostate and prostate surgery.  This site will not allow me to provide a direct link to that site, but you can easily find it by doing a Google search on [ dr catalona ].  Within that site, there can be found a wealth of expert information from Dr. Catalona.  Once you do the search and get to the homepage, there are buttons to the left, and a plethroa of links you can click.  (Some of the links are no longer active, I found.)
    • glenn77
      glenn77

      Posted

      I would also suggest you Google [cecilia lacks continence] for a very informative article.  The search should show, "Dr. Catalona Discusses Continence After A Radical Prostatectomy."   Click on that for the article.

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