Robotic Simple Prostateomy for BPH?

Posted , 12 users are following.

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.

 

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  • Posted

    I have had bph for 20years in 2005 had GL..My prostate kept growing

    to 175 gms..all my local ur wanted to do is more proscar...flowmax etc.

    The drugs alone were debilitating..I was wearing a cath for 7 mo. and the prostate was hindering its flow..so large. I opted for Simple supra open prostatecmomy. I am 65. The prostate is hollowed out but the shell ,nerves, sacks, shell are left and sujured. Recovery is 4-6 weeks but reblockage is extremely rare No more pills..special diets etc...infections rates are down..My prostate was baseball size ...so gl even homium or turp were out of the question and my prostate was growing at 30grm/year rate. Please know that this option takes more time to recover from but like my surgeon who does both gl & homium said..If I gl or homium you ..you will be back in a year on such a large gland. Since cancer was not discovered it may be worth putting this Monster to rest once and for all. Also too that even with gl or homium you will still need to be on drugs because this puppy will

    contiunue to grow. But htis surgery is more involved

    The very best to you --Good luck Neil

    • Posted

      I found GL so simple that I would noy mind having it every four years.  As posted above my prostate after GL regrew to 135grms in seven years.
    • Posted

      Thanks Bayliner for sharing this experience. I decided today to try PAE with Dr. Isaacson in Aug. Do you know if your SP can still be done on someone who had PAE if my PAE fails?

      All the best to you too.

    • Posted

      Hi Neil,

      This new procedure should work..its all about the size of the

      gland & its response to PAE. Another issue that I see is reoperattions

      When your 51 thats one thing but I don't want to under the knife

      if I am lot older, especially if you have other health issues. These

      are afterall operations and they can take a lot out of you. I personally

      do NOT see any reason that you could not have a OSPP later if

      necessary as long as no cancer is found. I LIKE YOUR APPROACH...but do you know if you will have to maintain a flomax ,proscar ,avadart diet etc regiment.?

      These drug sides are well documented on the net..

      Take Care

       

    • Posted

      Hi Bayliner,

      Thanks for your note. Dr Isaacson said I should be able to stop my Avodart and Flomax after the PAE. These drugs have ruined my life over the past 10 years. I do hope he is correct as I know of a few cases where there were problems  with men a few months after stopping these drugs. I hope he is right. All the best to you.

    • Posted

      Hi Bayliner

      I have the same issue. I had been using herbal for years - lycopene, saw palmeto and selenium. This worked well for years. Now I am having difficulties and my gland is 190 gms and growing. I am looking into the robotic simple prostatectomy and prostatic arterior embolism. PAE has less side effects and no recovery time but may have to be repeated as seems not to fix the underlying issue. Prostatectomy is a hospital stay and up to 8 weeks no sex! But would resolve the issue once and for all and it is paid for by insurance. (Funny PAE is paid for by medicare but not by insurance). 

      My question to you sir is did the prostatectomy affect your sex life at all? Side effects are listed as impotency and lack of sex drive.

      I am not ready to give up sex- just want to not get up 4-5 times a night and stop running to the bathroom after a cup of coffee.

      Thank you for any insights.

       

    • Posted

      Hi Spr,

      Boy, can I relate to what you have said...I do not know what

      age you are and  being trapped with this condition for so many

      years ...well to me I had to address it...and my one options was

      SOOP...In the past I had visited so many ER's just to cath me

      from bleeding etc..the list goes on. It was about time

      to get rid of this Monster . A "good" Uro should reliably

      give you the options & outcomes. This is a good approach..and safe..

      ...You have a very large prostate here..

      and we know the afflictions it can render ...I sometimes wondered

      what caused the swelling..The uro's just throw the standard drugs at it.

      NO tests for testosterone ,dht, estrogen, prostititus, etc. I did always

      have a high Cortisol level which I ordered the test myself.

      The Very Best

       

    • Posted

      i am 60 had BPH for 20 years and 5 biopsy to date all negative - praise the Lord- I am happily married and want to stay that way- sex is still important!

      thanks for the feedback- btw Uro said it was a very very large prostate

    • Posted

      I am very happy for you that everything came back negative.  Don't let your doctor talk you into a turp.  Sex will be a problem then  Have fun  Ken . 

    • Posted

      Hello Bayliner - if you have a moment I would love to hear how you have been since this post. Thanks.
    • Posted

      Good evening Howard.  Sorry I am just getting into this conversation.  But the 2 med that you are on are a pain in the butt.  Ask you doctor to give you something else.  There are many other pills that do not case the side effects that the two you are on.  Some time doctor don't even know what the side effect are they just pass them out.  Good luck  ken  

    • Posted

      Hello Ken - great to hear from you. How have you been doing with your own issues?

      Avodart destroyed my life. I started it in 2005 and was told it would reduce my prostate size by 50% and indeed it did after a year. But by year 4 my prostate started to grow again and grow and grow. My sex life was ruined and my energy plummeted and my body started to resemble a girl's.

      But here is the kicker - I could not get off the drug! 5-alpha reductase inhibitors like Avodart prevent the potent growth hormone DHT from being produced from Free T. But over time the prostate learns how to make this hormone very very efficiently using other biochemical pathways. So when the Avodart is stopped the prostate starts making massive amounts of DHT which accelerates hyperplasia and cell proliferation causing BPH growth to accelerate.

      The doctors will not tell you this and I have yet to find any man that could stop his Avodart after a few years short of prostate removal.

      I have tried to warn several men on this forum NOT to start this drug (or Proscar) but to no avail.

      Thanks again Ken. You have always been a strong voice on these issues and I hope your wisdom is followed here. I pray for good health for you my friend.

      Howard

    • Posted

      Howard  I feel for you buddy.  Why don't doctor tell patients this.  That med should be band.  There has to be something you can do.  I have some issues that I am dealing with I see my doctor on Thursday  Having a scope.  I'm going to read up on it to see if something can trough it off or something.  There should be a med to counter act it.  Take care  Ken 

    • Posted

      Hey buddy.  I don't know if there is anything I can do but I sent a couple of e-mail to some of the doctor to see if there is something else you can go on and counter act the Avodart.  There has to something.  Red a few articles on men that went off of it after 6 month's. But they did say after you get off it it can still cause you sexual problem.  It takes a while to get out of your systems.  I will let you know Ken

    • Posted

      Thanks Ken - I hope you come up with something - lord knows I've tried and friends of mine who had other procedures that helped their BPH (like turp; PAE;Urolift) but they could still not get off these drugs.

      From what I've read you are ok if you take these drugs for at most a year but after that these drugs change the basic chemistry of the prostate. They also change the basic chemistry of the body - no body hair; boobs etc.

      At this point I just CIC daily but as my prostate continues growing at some point I will have to have a robotic SP to ream it out. It already pushes up hard against my rectum causing constipation.

      Good luck to you and thanks Ken.

      Howard

    • Posted

      I hope I find something out for you.  What have the doctors say about Urolift.  They can put 6 to 8 clips and open you up.  I know they have been working on large prostates.  I will let you know if I find out anything..  Ken
    • Posted

      Thanks Ken - I am way too large for Urolift or any of the usual procedures. What the docs consider large is around 100gm and I am at 240 now. Also we have to be careful with some of these procedures like Urolift because the staples can prevent us from getting more standard procedures like a simple prostatectomy if it should become necessary down the line. That would leave only the radical prostatectomy as an option. Thanks. Howard
    • Posted

      I have heard that but they can be taking out if they have to.  I am having 2 MRI on Wednesday.  I have to should them my card to make sure they are done right.  When I had one done int the hospital some doctor do not read the scan right.  I was told that I had bladder stone.  My doctor did a ridge scope in the hospital.  It was the end of the clip.  240 is big.  I don't remember if you told me your age Howard.  I don't remember.  I'm 62 and I forget sometime.  I could not fine the TV remote today in my bed room.  Lood for 45 minutes.  I found it on my bed under a piece of paper.  It's He?? to get old  Ken 

    • Posted

      Gee Ken - 62 is still young - they say 60 is the new 40! I am 68. But these chronic health issues sure take their toll over time. Stay positive my friend. Howard
    • Posted

      Yes I will.  I have had a lot of problems over the last 5 years lets say.  I'm a diabetic, have high blood pressure, a-fib. I have a monitor in my chest and a stent on the right side of the heart.   Was in the hospital 9 times in 2016 for that.  But I move on.  Also at one time I wade 325 pounds.  Over the last 3 years I have trouble with my stomach can't eat a lot.  Easy way to say it.  The food I eat stay's in my stomach for 10 to 12 hours.  It also effect my voice.  Most of the time I talk horse.  But I deal with everything that comes my way.  Off my BP pills and I am down to 172 pounds. I had a 9 hour heart ablation to get rid of the a-fib.  I don't give up but I do not give total control to any doctor.  You do what we talked about and that is it.  My Urologist told me I am to strong willed. No one is going to do anything or remove anything with out my permission.  You do know once you sign the paper for a procedure the doctor can do anything he wants.   Now with this lower problem  I will see what my doctor will say on Thursday.  Peed twice today not much still a lot of back pain some groin.  It seam to be better if I lay on my side.  Just got out of bed.  sitting hear at the computer I hurt but I will deal.  We all as we get older have to deal with a lot but one thing we never should give up on our body's we are the ones that have to deal with any and all side effect that any procedure we have.  Life will go on.  God bless Howard and all men  Ken       

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