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Does it always progress?

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mike75537
mike75537

Im a 66 year old male and have been treating a enlarged prostate or lazy bladder for about  4 years. I started with Flomax and hated the side effects so I tryed Saw Palmetto herb and it worked great with no side effects. I noticed now where I need to use it twice a day now instead of just once a day to get the same benefits. I only have one kidney and see my uroligist once a year unless I am having problems. I read on my of the posings here that many talk about catheders and surgerys. Will I eventualy get to the point where medication does not help? Itried finasteride 1% for hair loss a while back and did not use the saw palmetto while I was on it. Big Mistake. Bladder got huge. Any feedback appreciated.

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  • jimjames
    jimjames mike75537

    Posted

    There are different points of view, but my opinion is that surgery is the last resort, not an early intervention. You can google "IPSS Score" and take the five minute test to see how you compare to others in terms of symptoms. A visit to the urologist to check how much is left in your bladder (PVR) is important. If you do have retention, I would also ask for a bladder/kidney ultraound study to make sure that your kidneys have not been compromised by any retention. If you're kidneys are good to go, if your retention isn't too bad, and if your symptons (see IPSS score) are not in the "severe" range, then I wouldn't be thinking about catheters or surgery at this point.

    Jim

  • dai12345
    dai12345 mike75537

    Posted

    I would get something done now. My urologist discovered I had a greatly enlarged bladder and was at risk of it becoming dead. I had a HoLEP which is ideally matched to a very large prostate. It was 100% successful so look at that and other options. Don't drift into a dead bladder.

  • j12080
    j12080 mike75537

    Posted

    Mike I am your age. I had BPH for nine years. We are all in the same boat. I was lucky in the fact that I have not ever tried or started the medications.

    I looked for a long time and traveled around talking to doctors on different procedures for 20 months then made my decision. I started using this site over two years ago while I was doing my searching. I decided one year ago in December to go  with FLA and started a thread called "Going with Focal Laser Ablation for BPH" on this site. 

    My choice was a great one for me. I would tell you three things I now believe. Do all the research you can. Use and apply logic in the way the procedure is done and how it is suppose to work. And most important the success you have is heavily in the hands of the Doctor you choose to do the procedure. So doctor plays heavy in what your choose. Some of the procedures are mechanical. Some are random in their approach. Some are with "eyes on" the gland by the doctor during the treatment and some are not. Some invade the Urethra and some do not. Most are provide by the Urologist and now some are done by Interventional Radiologist. All I can tell you is to have a priority list of what is important to you out of the treatment and try to find the best one for you. I personally was most interested in my sexual function being complete while I received the symptom relive from BPH that i wanted. Not all procedures match my priorities. It is easy to eliminate those. Again logic used in the selection of a procedure can and does go a long way. These procedures are more engineering than magic. 

    For example I felt that since BPH cannot be CURED by any of the treatements, I want a treatment that reduced the size of the gland in tissue area mass but only in the right places, not random and not everywhere. Knowing the gland will continue to grow after the procedure, I did not feel that using a UROLIFT device with clips place in my gland was good for me. I was concerned that when the clips need an adjustment or even removed, the tissue of the gland might have grown over the clips. When I pursued this with the Urologist he did tell me that is a long term concern that they have yet to answer but is it already showing that this happens. This is logical. 

    You need to know what you have. 1) what is you PSA? 2) what is the size and the density measurement of you prostate? These two numbers will tell you what is normal PSA for your size of gland. 3) what is your median lobe size? How does it protrude into the bladder? Is it causing retention?

    What is your free PSA? Studies have shown that men with a higher total PSA or in this “gray area” and a free PSA greater than 25% are more likely to have a benign condition than to have cancer, making a biopsy unnecessary. Men with a total PSA in the same range and a free PSA below 10% need to have a biopsy. (I would use an MRI also tor this ratter than a standard blind biopsy.) More likely than not, they have prostate cancer  4) What is your urine analysis with Flow?  Can a doctor show you the pinching of the Urethra inside the prostate and the problem in the bladder intrusion so you can see it with your own eyes? All this data will help you know what you are dealing with when these Doctors try to sell you a procedure. 

    Most of this information I gain about my prostate was with a 3 TMRI done locally in my city then read by an expert Interventional Radiologist that specialized in Prostate Cancer. In fact I used the same MRI to get three opinions. I never had a TRUS Biopsy by a Urologist though they tried really hard to sell me the quick 12 needle biopsy. Instead when I discovered that the same 3TMRI would show the cancer legions if there were any, I let the same MRI give me that answer also. 

    There are a lot of BPH treatments and all of them are success for most and yet not for some. Just do your research. Talk to doctors and if they are too busy bad mouthing the others,     RUN. In the end match the procedure to the priorities you have and pick a doctor that really cares about you and your success. That is not easy to find. 

    I know it is a trying time for you but I can also tell you the other thing in hind sight that I learned is waiting too long is not  a good thing when it comes to BPH. Size does matter when it come to prostates. Mine was 125 cc which is about a tennis ball size. That was ok but, I think that I should have done it at about 80 to 90 cc with the level of symptoms I had then and It may have been even better results. Not to say I am not very happy now because I am. I got my life back under control. 

    Good luck. 

    • ed70868
      ed70868 j12080

      Posted

      great post. I had PAE 28 months ago. It worked well for awhile. I am now starting to have urination problems again. Not sure what I will do this time. I had a 140 prostate size before PAE, now 97 will a medium lobe of 37 which a 3TMRI indicate it was pressing up against my bladder which is probably causing the problem. The Urination is all over the broad from strong to very weak. Some nights I do not get up at all and others 3 times or so. I had a fusion biopsy since the 3TMRI indicated a lesion, but the biopsy found that it was probably the results of the PAE and was not cancerous. I might have the PAE again since the process has been more aggressive lately and reduces the prostate to a greater degree than when I had mine. The question I am working on with not much luck can the PAE also reduce the medium lobe successfully. Some doctors say yes and some are not so sure. My second choice would be some form of focus procedure including freezing. The PAE is an easy choice for me but it may not work on the medium lobe and I gain nothing but do expend 10,500 which is the self pay price for the procedure now at North Carolina Medical center vs 6500 when I had my first one Oct 28th 2015. The second choice is much harder to decide on at this point. 

      I can always go back on flomax which I was on two a day for years before PAE. Take none now. The stuff sure messes up your sex life when used for years. Took 18 months to get the feeling back in the penis and things working more or less normal during sex. 

      It is a very tough decision for all of us. Somethings works for one person and creates a problem for another. 

      I am not sure why but I have never had a retention problem even tho I had a large prostate. I guess it grew in the right direction.

      Good luck on any decision you make and wish you well

    • jimjames
      jimjames ed70868

      Posted

      Hi Ed,

      You mention you don't have retention which isn't unusual since studies show prostate size does not necessarily translate to symptons. Other than variable urine flow and getting up three times at night, do you have other symptons. Do you know your IPSS score? Going back to your night time visits, given that you don't have retention, it's most likely that getting up at night is not at all related to your prostate and therefore will not change with any surgery.

      Jim

    • j12080
      j12080 ed70868

      Posted

      Thanks Ed.

      I think it is generally accepted that the PAE rarely works on the large median lobe. It is just impossible to place the tissue reduction from blood flow control with the PAE in a specific area like the median lobe let alone, remove specific tissue inside the median lobe that is the tissue pushing up into the bladder. 

      Since I have not kept specific notes (I wish I had) I do not remember who it is that had the PAE procedure but continued to have the large median lobe. After a PAE,  this person then decided to have the FLA by Dr. K and said it was successful. It may have been Peter. i will ask.  I also know Russ had the median lobe issue and had it successfully removed with the FLA treatment as did I. 

      Since you have the MRI data after the PAE, I would contact Dr. Karamanian and send it to him. He will review the gland and tell you if this is the problem and if it can be dealt with. He would show you what is gone and what is left. Knowing what and where you need to remove may make it easier to decide what to do next.

      He would not charge you for looking at that MRI to the best of my knowledge and you would not have to travel to get the opinion. This has bee the fact in the past and I am sure it is still that way. Then you can consider your options when you know the facts. A conversation is well worth the effort in gathering your research. I do also know that your current MRI if after the PAE, should show exactly what tissue and in what areas was the immobilized tissue and what was left. 

      Just a thought. 

    • ed70868
      ed70868 jimjames

      Posted

      I do not watch what I drink or how much salt I have during a late dinner, so yes it is my fault in the 2-3 times a night process. May have to consider changing a few things.  I also drink about 4 cups of coffee every morning. The coffee does create a problem in it takes longer to pee and it stops and starts a few times. Just have to be sure I am finished so I do not have retention issues. I do not push like some have stated they had to do which creates the enlarge bladder wall and muscle control problems at some point. 

      For my age the bladder wall is very slightly enlarged which is not a problem according to 3 doctors that have reviewed my 3TMRI. A much younger person would have to be concerned since the enlargement will continue. I do not plan to do anything till maybe the first few months of next year on any procedure unless I have to. 

    • ed70868
      ed70868 j12080

      Posted

      thanks ... will look at that option. I had 3 doctors look at the MRI and two were not sure it was a lesion, but they suggested I get the fusion biopsy anyway to be sure, which I did. 16 total cores with 8 in the area of the lesion. Nothing found. got a second opinion on the slides from John Hopkins which concurred with the findings. I did the 3TMRI on my own dime and had to pay for the second opinion and 200 dollars for the use of the fusion equipment .. Insurance paid for everything else. The self pay 3TMRI was 695. Learned from my insurance company that having the 3TMRI with the deductible and 80/20 I would have probably paid the same amount using the insurance. Now that is funny.. so much for insurance.

       

    • jimjames
      jimjames ed70868

      Posted

      Sometimes experimenting with fluid intake, diuretics (coffee), and other lifestyle changes can solve getting up at night, but sometimes not. As we get older, many of us have what is termed nocturia polyuria, where the per cent of urination shifts from daytime to night time. If that's the case, nothing will make much of a difference, including any procedure, be it PAE, TURP, Urolift, FLA, etc.

      Which comes back to what do you want to accomplish by potentially having a procedure next year. You don't have retention, three docs said your bladder wall is OK, and I assume you have no kidney issues or you would have been told.

      It will be easy enough to find a doctor who will do whatever procedure they do, especially when they see your big and juicy prostate, but again prostate size alone is not a reason for a procedure. So be careful when a doc says he will do this and that, because what they are talking about are technical parameters and not symptomatic relief. The halls (and this forum) are full of procedural technical success but what you really want is a clinical success, ie it will make a difference in your lifestyle.

      Technology is tempting but remember curiosity and the cat smile

      Jim

    • ed70868
      ed70868 jimjames

      Posted

      you are very correct...... My peeing is getting a little worst every month, so will have to make a decision at some point. I am 75 and healthy ...still enjoying life and travel. I would hate to take the pills again except for a very short period of time. I enjoy the bedroom activity to much to lose it again. LOL

      The PAE was a piece of cake for me and worked well for a couple of years. Dr. Isaacson in North Carolina looked at my 3TMRI and indicated there was a lot of room for improvement from the first procedure. He also stated that he could reduce the medium lobe with this procedure,  Not sure about this last statement. Oh well just part of living having to make these kind of decisions. Mine are easier than most on this forum. 

    • stan98754
      stan98754 j12080

      Posted

      HI  J12.... smile

      very similar case to me. Big median lobe  ( 18 mm long )protrudes into the bladder & blocking  bladder neck.  Prostate volume about 50cc. PSA 3.3,  fPSA/tPSA  20%.   After PAE last April  in Portugal. Worked about  5 months ,but again getting worse . Every day self cath.  Urgent treatment necessary .  I'm from Central Europe, so just REZUM  treatment in neighb. country ( Germany). What is your point of view about REZUM ?  Thank you , Stan (63)

    • j12080
      j12080 ed70868

      Posted

      I am almost positive you will not pay for this service with Dr. Karamanian. 
    • j12080
      j12080 stan98754

      Posted

      YFI I just checked his web site and there is not a charge to do that or a consultation. He never charged me or anyone else I know if this is of interest to you. Good Luck 
    • jimjames
      jimjames stan98754

      Posted

      Stan,

      Do you know why your PAE failed? Have you had aerodynamic testing which helps predict surgical success? A lot of folks make the mistake of jumping from one procedure to another, as if there is one procedure much better than all the others. Fact is there isn't. What you tend to get is "this procedure worked great for me, so it should for you". If only life was like that!

      Do yourself a favor and find out why things went south before jumping into Rezum or any other procedure. How is the self cathing going? Do you know that self cathing can be a viable longer term solution, not just short term? I've been doing it for four years now and because of it I will probably never need an operation. Self cathing empties your bladder and protects your kidneys as well as any surgery. Not for everyone, but something to consider.

      Jim

    • jimjames
      jimjames

      Posted

      Whoops. Meant "urodynamic testing", not aerodynamic!

    • stan98754
      stan98754 jimjames

      Posted

      I underwent  PAE procedure  in  April  2017  in Lisbon Portugal  . Prof. Pisco is pioneer  of this method in Europe with more then  1200 operations done.

      Due to my  big median  lobe and his experience  he was sceptic about  100% success  in  my case.  And he was right.  After good progress in months April  - September  2017  ( decreasing of  retain urine just to  100 ml,)  the situation gotten worse with current  200-350  ml.   I must self cath  2 x daily  at  noon and midnight.  Twice got infection, treated by ATB.   The situation is realy bad  , Im still active  in work , but with bad LUTS symptoms I cannot  work  ,  cannot sleep more then  3 hours total in night  and if I couldnt provide  self cath. nocturia takes a place. 

      So it is question of time  when  and where I must undergo  another treatment .  My favorite is FLA  .

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