Relatively small prostate with a prominent median lobe: what is the best surgery?

Posted , 12 users are following.

Hello,

I had PAE on July 11.

My urologist told me it did not work.

I am not so sure. Still want to wait some time longer.

However, it might be true that with my big median lobe PAE was not for me.

What could be the best surgery in my situation?

Did somebody with a big median lobe had improvements with TRUP or UROLIFT?

Anything else for my specific situation?

Thank you.

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  • Posted

    Hi, FLA is brilliant, no pain, no side affects , excellent results.

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  • Posted

    There was a person named Stan from Austria on this site about a year ago. He also had a small prostate but large ball valve type median lobe. PAE did not work for him, then he tried Focal Laser Ablation, (FLA), with Dr K in Houston about a year ago. It worked well for him, and he posted here for a few months after the FLA, but I have not seen any posts from him for about 8 months. I suspect he is out enjoying life.

    FLA has not been covered by insurance in the past, so most people were paying $21,000 out of pocket. If that is too expensive you can try Rezum if you want a minimally invasive procedure with low side effects. It has almost no incontinence or ED. RE is about 10%.

    image

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  • Posted

    Fla with Dr. K. Worked for me after 2 try's. Didn't feel like it wotked 2nd time around either. Had to still take Flomax. But after a year from 2nd fla i slowly stoped Flomax. Now i pee pretty dam good. Good flow. Hardly any night time visits to bathroom. I can hold my pee without much worry. No more Gatorade bottles in car..No dribles. Not much bladder pain any more.

    Only problem is sometimes hard to start. I do get some of the above problems every now and then but over all its great. Didn't think it worked after both times with fla. But after a year on second time it seems so far that its working pretty dam good.

    Jim

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  • Posted

    Fla with Dr. K. Worked for me after 2 try's. Didn't feel like it wotked 2nd time around either. Had to still take Flomax. But after a year from 2nd fla i slowly stoped Flomax. Now i pee pretty dam good. Good flow. Hardly any night time visits to bathroom. I can hold my pee without much worry. No more Gatorade bottles in car..No dribles. Not much bladder pain any more.

    Only problem is sometimes hard to start. I do get some of the above problems every now and then but over all its great. Didn't think it worked after both times with fla. But after a year on second time it seems so far that its working pretty dam good.

    Jim

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  • Posted

    Fla with Dr. K. Worked for me after 2 try's. Didn't feel like it wotked 2nd time around either. Had to still take Flomax. But after a year from 2nd fla i slowly stoped Flomax. Now i pee pretty dam good. Good flow. Hardly any night time visits to bathroom. I can hold my pee without much worry. No more Gatorade bottles in car..No dribles. Not much bladder pain any more.

    Only problem is sometimes hard to start. I do get some of the above problems every now and then but over all its great. Didn't think it worked after both times with fla. But after a year on second time it seems so far that its working pretty dam good.

    Jim

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    • Posted

      It was a total of 2 years. It took a year the second time around. It has only been about 2 months since i quit flomax. Not really sure how or why it cleared up and took so long. Very happy i know longer have to take meds. He charged me 10 g for second time around. Going to call Dr. K soon to let him know that it worked.

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    • Posted

      I also had a small prostate. There has been a few guys in here that had small prostates like mine that it didnt work also. i spent probably 35 grad total. Pretty much wiped me out, but i do feel it was worth it.

      i am 62 so i will be working will into my retirement if i get one.

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    • Posted

      Hi, Jim,

      have your doctor ever explained to you why your first FLA did not work? I mean they saw 3D MRI of your prostate and knew where is the problem. So how they could have missed on removing the problematic part?

      Thank you!

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    • Posted

      Not really. I think since my prostate was small he was afraid to be aggressive. He had not done to many ablations at that time. I was sorta one of the first ones. Second time around he got more aggressive and probably why i have retro now. Not sure why it took about a year to get better and off flomax.

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  • Posted

    PAE shrinks the protate but may not address median lobe issues. Most reported PAE failures here involve median lobe - that was my issue. TURP will solve this issue because the median lobe will be cut away. FLA works but is not covered by insurance and you will have to pay about $25k and fly to Houston. If you have the time and money that is a good option. My TURP was completely covered by my insurance, operation was 2 miles from my house, and I was home after 4.5 hours. Each procedure has to be considered from may aspects - insurance, cost, convenience, time, and potential side effects. Everyone is in a different circumstance so there is really no best answer for everyone. HoLEP is very effective, but again may not be covered by your insurance and is only performed in a few locations.

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    • Posted

      Thank you, Tom.

      When did you have TURP?

      How fast you have recovered?

      My situation is probably different. I am 79 years old and the first time I was told I needed a surgery was 20 + years ago.

      I waited and waited and waited until in June I was diagnosed with stage 4 CDK.

      So my waiting ended, and they put in indwelling catheter.

      In addition my bladder is stretched and I have many problems with linings of my bladder.

      My urologist told me that there is about 60% chances that TRUP will work for me mostly due to my bladder.

      I wonder if the same applies to FLA or with FLA my chances will be better

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    • Posted

      Alex,

      Had my TURP (bipolar TURP) in April. Had Foley catheter in for 3 days post op, which was the only irritation. Recovery was very fast. I am a regular exerciser and did not do my normal exercise routine for a week, then gradually got back into it. Once the Foley was out I basically felt fine. My flow gradually increased for the next few weeks - urologist said there would be some prostate tissue swelling. Now, after five months, my bladder continues to calm down - less frequency and urgency than before. This would also be the case with any procedure - takes time for the bladder to heal from retention issues. I am wondering if your kidney issues are related to the prostate retention issues you have experienced. I am speculating, but I would expect some improvement in kidney function once your urine is flowing naturally again. The TURP and recovery was much easier than I was expecting. I am 73.

      Tom

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    • Posted

      You are right, Tom. My CDK is directly related to my urine going back to my kidney. I was told about this a long time ago, but ignored it. After I was fit with an indwelling catheter my kidney improved a bit from stage 4 to stage 3.

      Thank you for sharing your story about TRUP!

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    • Posted

      Hi all,

      I had a partial success with PAE then (at least so far) great success with FLA. It did cost $21k and I did fly to Houston. So you might ask why did I fly from Australia to Houston AND pay $21K? To avoid the many known risks associated with TURP.

      We should also, to give a more complete view, share that these other big differences between TURP and FLA . TURP is known to cause retrograde ejaculation in > 90% of patients and also causes inability to gain an erection and incontinence in a percentage of patients as well. TURP also requires general anesthesia with it's known risks and causes substantially more bleeding. (FLA typically causes less than 2 tablespoons of bleeding and very few side effects. TURP is usually successful in improving flow and Urologists on average are comfortable with it as it is what they know.)

      So another way to think about it might be are you willing to accept the risk of anesthesia, bleeding, retro, possible incontinence and possible ED to save 21K? Every man is different, has his own unique circumstances and and has to make his own decision.

      Also FLA is a much more modern procedure with much less clinical data. We really do not know how long it helps or if other complications may arise later. It seems to help many men in the short term with many fewer side effects.

      Also have heard that some insurance is starting to pay at least a part of the costs for FLA so perhaps worth looking into with your doctor.

      Good luck with your decision and your outcome!

      Joe

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    • Posted

      Thank you, Joe, for your very useful info!

      I wonder if you know what is success rate for FLA?

      Also when you said you had a partial success with PAE you meant it stopped working or it did not work as expected?

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    • Posted

      Joe,

      Since your post was directed at me I will just add a few comments. I have made this point before on this forum and it is absolutely important that everyone understand that there are three types of TURP: the older style monopolar TURP, and the newer bipolar and plasma button versions. The older style did cause a lot of bleeding and required a hospital stay. The newer types use a plasma button tip to cauterize the blood vessels and there is very little bleeding. My TURP was bioplar and the only bleeding I noticed was from the Foley catheter that I had in for three days post op. Once the Foley came out, the pinkness of the urine went away. Also, I was in and out of the hospital in 4.5 hours. General anesthesia? Yes, but I was offered a spinal - my choice. I went for the general - one minute I was talking to the staff and the next it was all over. No pain or discomfort at all. Very easy. No incontinence. I already had ED from prior radiation for prostate cancer, but despite this I can still get a bit of an E. Will next try Viagra. If I were 10 years younger (now 73) and had an active sex life and retro was a big deal then I might have gone for something other than the bipolar TURP. There are versions of TURP that are known to spare the sexual side effects, so this is certainly worth researching.

      There are many on this forum who have had failed FLA or have had to go back for a second treatment, so there is no magical cure for all. I would say that the $25k for the operation and flight and hotel stay in Houston is a BIG deal for me and many others... this isn't pocket change. I would call this a non medical side effect. I am not saying anything negative about FLA, but, it just wasn't possible for me.

      There are, of course, a wide number of alternative treatments for BPH and all have their pros and cons. Lots of research to do for anyone seeking treatment. And, there are also many cases where the prostate has been reduced in size and it turns out the real issue was the bladder. This is a very challenging and frustrating area of medicine.

      When I was treated with radiation for my prostate cancer in 2014 I now wish I had gone for the RRP. Yes, I might have had some incontinence, but no more prostate to torment me with retention issues.

      Can you imagine what men did before modern medicine? I am thankful that we have progressed to the point where we have so many treatments and more are in development.

      Tom

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    • Posted

      Thank you for your input, Tom. You said that " There are many on this forum who have had failed FLA or have had to go back for a second treatment," Maybe you have links to the posts?

      Thank you!

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    • Posted

      Alex,

      I don't have the links but you could always start a new post and ask this very question. From what I have read here the first treatment costs $25k, but the redo costs $10k.

      Tom

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    • Posted

      Hi all,

      Not trying to be personal or direct this at anyone... just trying to help people get the best information with which to make difficult decisions.

      At least for me deciding what to do was very difficult. I had two urologists, who at the beginning I thought were the "experts" who I later learned were just pushing the limited scope of the procedures they knew how to do. When you first start out on this journey, with limited information, you might get talked into doing something that is sub-optimal and permanent.

      Just as an aside - I fund and work with companies that develop new drugs. These companies work exclusively on drugs for orphan diseases meaning that the populations of patients are small and there are not good existing treatments. And they are not attractive to large pharma as there are just not enough patients to make money. So these people are often left to suffer. This makes me aware of how quickly medicine and medical procedures are developing, how many new potential drugs/procedures are being tested and how it often takes time for new drugs/procedures to catch on even after they have been proven safe and efficacious. It can be very difficult to keep up.

      This is the case with BPH. Part of the reason there are so many opinions here is that the science is not settled but it is progressing rapidly. Here is a summary from the mayo Clinic that may be of some use: https://www.mayoclinic.org/tests-procedures/turp/about/pac-20384880 .

      I believe that most men are not that interested in what happened with any one of us... but rather with what USUALLY happens, or what is LIKELY to happen to them with a given procedure or doctor.

      From the research, with TURP, regardless of monopolar or bipolar, loop, button, etc there is usually significantly more bleeding during and after the procedure than with some of the newer procedures. The larger the prostate the bigger the problem can be. You might be required to come off of your blood thinners and in some extreme cases a transfusion is required. It's not a debate just clinical fact. TURP is also clinically more likely to cause ED, incontinence and retro. It does not have the benefit of an advanced 3T MRI to guide the doctor precisely. Yet it is still the standard of care in the absence of enough clinical evidence of safety and efficacy with other treatments.

      So time will tell. I would also suggest that these procedures can be highly dependent on the doctor, the facility and the doctors team. With FLA Dr Karamanian told me he had done hundreds of FLA cancer treatments. I was patient 53 using FLA with him for BPH. He told me he had one patient report ED however the patient was taking finasteride against the Doctors wishes. So cause unknown but even if it was from the FLA, with this cohort it would be less than 2% risk. His retro and incontinence were also very low. I have shared notes with a number of men who preceded me and they uniformly have had good experiences. The doctor told me he had to do 2 repeats that were then successful. So again less than a 4% rate which is lower than the repeat rates for other procedures.

      I like the concept of FLA medically because it appears to be a superior procedure (in my opinion). The patient is inside a 3T MRI machine during the procedure. So the doctor can see where the laser is within 1mm and see the entire Prostate, in real time in 3D. That is how he avoids heating up critical nerve bundles or destroying ducts or urinary sphincters. He is measuring the temperature exactly the entire time. The tissue is destroyed with heat not cut away.

      After the procedure the doctor showed me the post operative MRI images where it was instantly clear that the median lobe and transition zone had been materially ablated and the key areas were not damaged (ie you could still see the blood flow there.) I now have excellent flow and no side effects.

      So why doesn't insurance cover FLA? (Or some of the other new procedures?) First they have to prove to the FDA that the procedures have acceptable safety signals and deliver better health outcomes to patients. Typically with at least two clinical studies with a sufficient number of patients. That is not done yet. Once complete they can start the process to enable a new medical procedure code - it is this code that gets the surgeon reimbursed and starts the process to get insurance flowing. That is likely to be some years away for many of these new procedures. It is a challenging and expensive process.

      The cost of FLA as of 3 months ago was $21K. I don't know where the idea of $25K came from? While it is a lot of money for sure, I assumed that if my wife welcomes me at least twice a week for the next 25 years it works out to about $8 per. What better to spend the money on... 😃

      My best advice to anyone in this situation is do extensive research, get a 3T MRI so you know exactly what you are dealing with (ie exact size of prostate, median lobe, etc etc.) Get more than one opinion, ask lots of questions, pay attention to which doctor and which facility will do any surgery, talk to previous patients and consider the alternatives.

      If you have a large prostate and do not have a protruding median lobe and you do not have "tortured" blood vessels then you may be an excellent candidate for PAE.

      If you have BPH and you do not have a pacemaker and do not have any replaced hip or other hardware that might conflict with the MRI and you are willing to pay, you may be a good candidate for FLA. If not perhaps Resume or one of the other alternatives.

      For me at least TURP would be the last choice by a wide margin but that is just one man's opinion.

      Best of luck to all!

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    • Posted

      To answer your question about the $25k: FLA $21k, flight to Houston for 2, hotel stay, meals, cost of MRI out of pocket for me to send image to Dr. K, 2.4K. It all adds up. I didn't have the money or the time to do this.

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