My BPH Mistakes

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We all get so much information thrown at us about BPH solutions, procedures, drugs and devices. We can only rely on each other's experiences to sort through it and decide how we want to proceed. One way is to discuss our mistakes and failures. Of course my mistakes may well be someone else's success and therein lies the value of this exercise.

We can all agree on 2 things though. As Ken reminds us daily it is up to us to do our research and decide what is best for us and not get pressured into some decision because an arrogant doctor is berating us about questioning his suggestions. The other given is emphasized by Jimjames that just because we have peeing problems does not right away mean it is due to BPH. There are many other reasons we have slow streams and they must all be carefully explored by competent doctors before we decide on our path forward. I for one am on my 9th urologist and 4th IR. I take great pleasure in firing them now given the suffering I have endured because of being afraid to question them in the past.

I have had 4 unnecessary needle biopsies over the past 20 years. I believe the first one gave me prostatitis which later developed into BPH. It was all because I had a PSA value of 0.9 in 1996 and my family doctor then was sure I had prostate cancer. Back then at 49 I didn't even know what a prostate was and never had flow problems. But I sure did after they butchered my prostate.

Then a few years later I agreed to taking Proscar/Avodart. My uro then gave me no information about the devastating side effects of these poison drugs if taken for more than a few years. They all but destroyed my libido and overall energy and now when I try to get off Avodart I get the rebound "5-alpha reducatse inhibitor syndrome". It is awful and as I developed these side effects he just told me "I was getting older".

Then I tried a PAE which really concerned me as it seals arteries. Again I was told I was the "perfect Candidate" with large arteries and a large prostate. Well it failed and left me $8000.00 poorer and with lesions that were classified as "high likelihood of cancer". Fortunately expert targeting biopsies by Dr. Karamanian showed them to just be inflammation.

Then another IR suggested I try a varicocele embolization to see if this could reduce my BPH along the lines of the Gat-Goren theory. I could not afford the trip to Israel and the hgih cost of the procedure so I opted for a local IR who told me he could do it. There were lots of red flags but he was "so reassuring". Now I am crippled with a botched procedure and live on antibiotics and pain killers due to scrotal pain and testicular epdidimytis. I likely will have to have my left testicle removed.

The only good decision I made was to follow Jimjames and others here on the forum and learn to do CIC. For the past 30 months I have been "master of my domain".

So this is just a sampling of my mistakes. Of course others have tried these procedures and drugs and have met with success.

It would be great to hear of everyone's mistakes over the years (and successes) so we can all benefit. We are all very different and respond differently but having said that we are also in the same boat together, though maybe on different decks! Take care all. Howard

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  • Posted

    Hey Howard

    That is very well said. I'm sorry these doctor used you and bullied you into procedures you did not need to have. I'm very happy that CIC is working for you.

    I try to tell men to learn about there bodies. Like you my GP sent me to a Urologist I did not know what a Urologist was or what a prostate was. I was 47 She said I had prostate cancer. My PSA was 426 Had all the test and a 12 needle biopsy never again.

    I have been telling some of the younger guys on here that are having problem to learn about there body. I told one last night he's 18 start out knowing what all your parts do. Eat right and do what you have to so when you get older you are not going to have a problem.

    Howard you are great you have learn to put your past behind you and move on with what works for you.

    Keep it up..........Ken

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  • Posted

    Hi Howard - My BPH mistakes (or decisiveness):

    1. 10-11 years ago, I had a uro who was big on biopsies for high PSA scores. He knew I had an enlarged prostate and stabbed me twice. No cancer. I had at the time, no other symptoms. Very interesting how needle biopsies can change the sensation of orgasm. I was seeing him because I turned 50 years old and thought that was the age to start seeing an urologist. After two biopsies, I was tired of him treating my prostate like a pin cushion. I fired him. I did not see another uro until last year, 10-years later.
    2. Fast forward to last year. New uro because I experienced an accute retention episode. This uro suggested self-cath to manage retention episodes. Terrible experience. He had his nurse and residence attempt to teach me how to self-cath. They made me bleed real bad, which caused a foley insertion and terrible spasms. At my follow-up to remove foley, uro insisted on them teaching me again. I refused and walked out without a foley. Locked up again 5-days later. Fired this uro and got a referral from my PCP.
    3. Referred to a new uro (3rd one now). He wanted to put me on meds to treat my symptoms. I refused forcing him to look closer at my prostate. Rectum scan showed 300g+ prostate. He quickly jumped to a Simple Robotic Prostatectomy. I was already going there with my own research and convinced this was the fix to my retention problem. However, I did not like this uro, nor did I like his standalone practice. Fired him and went to a better facility and uro.

      I am not sure the above is all mistakes or just being decisive along the way towards finding my solution. Somewhere along the journey, you have to take control. Getting smart quickly is a key. I have an aggressive nature when it comes to fixing my own problems. Plus, I was on a indwelling catheter and hating life. Urgency and impatience motivated me to find the right uro in the right facility who could first confirm a Simple Robotic Prostatectomy was the right choice, answer all my questions, and then perform the procedure. The timespan from my first meeting with him to being in the operating room was 3-weeks. Boom!

    Dave

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    • Posted

      Dave

      Sorry you went through what you have to go through to pick a good Doctor. If you feel that doctor is not hearing you you have to move on. My urologist is great. If I don't understand what he is telling me he will even draw picture. He did not take 10 minutes and go. I was with him for 45 minutes a few time.

      I had a problem with my A-Fib doctor for 6 month's all he wanted to do is put monitors on. That is $2700 a monitor. And I have one in my chest. The last time I same him I just got out of the hospital from a attack and he wanted to put another monitor on. My kids were not happen . So I got a hold of the doctor that I saw in the hospital. He told me that from the monitor in my chest he could tell I was having a problem. 3 weeks later I had a 9 hour heart ablation. He burned the whole left side of my heart.

      The thought here is that if your doctor is playing around and not doing right by you get one that well.

      Not all procedures are for everyone and for larger prostate there are less options. We all have different concerns so do your research.

      That's all I have to say........Ken

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  • Posted

    Howard,

    I try not to respond much anymore on this site. But I do read them and I have to tell you that this is the best post I have ever read on this site.

    I agree with your feelings and what you have said completely even though I found very good success in controlling my BPH and I found an excellent caring IR. I can't hide my hate for the urological industry with the fact that they do approximately 1,250,000 biopsies a year at an average cost of $1,000 (do that math) and never provide options that are better but since they cannot do them, they are against them.

    I am very sad about your story but very proud of the job you did laying it out there. This post will help other men as your story is reality. Excellent piece you wrote.

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  • Posted

    Thanks for sharing Howard. I am glad I have rejected all uro suggestions so far, one Turp, one biopsy, one Urolift. My mistakes were I used to consume too much liquid and holding it in too long, ignoring my urges to pee, and not taking care of my chronic constipation. The result is now I have a distended bladder, not knowing for sure if it was caused BPH or not.

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  • Posted

    Thanks everyone for responding and your kind remarks. I hope we get many more "testimonials".

    I forgot to mention my most recent mistake. My uro a few months ago suggested I get a liquid biopsy to screen for prostate cancer. These are just pee tests that look for DNA samples related to prostate cancer. I studied the web site and it said the screening is for men with PSAs between 4 and 10 with NORMAL size prostates. the results are used to decide if a needle biopsy of the prostate should be done. The problem is that these tests return a probability for cancer that also inlcudes the PSA values.

    Anyway, i submitted to the test and the results came back with >94% chance I had a high grade cancer!! My urologist dismissed my questions about the validity of the test for men with BPH (my PSA then was 26 for a 300 cc prostate). He wanted to do a saturation biopsy of the gland with 64 needle samples!! I rejected this and called Dr. Karamanian and asked him to send in an order for a mp3T-MRI to get a look. he also said these liquid biopsies were not reliable for men with BPH because they used an algorithm that excluded this disease.

    Well, after 3 months of worry and stress the MRI showed my prostate was clean!! I have since fired that uro as it turned out he had a financial interest in the company that does this testing. But it sure was stressful.

    I think it is wonderful that men who had successful prostate procedures, like j1 (FLA) and DaveCanPee ( SRP) still help us here. When my PAR failed and I was in full retention my only option back then was CIC or a SRP. But I could not find any one who had had the SRP and my uro who wanted to do it and actually scheduled it would not give me any references. So I learned CIC. Also FLA was new then and not really standard for BPH. So it is great that these 2 pioneers stay on this board to help us.

    Regarding what is considered "minimally invasive" or not, I can only say that my varicocele emobolization procedure was about as minimal as you can get as I was awake the whole time with no pain. Yet it left me crippled whereas a "major" surgery like the one Dave had where he had a general anasthesia for several hours and had his bladder opened and the full prostate removed resulted in a complete "cure" fr him with no side effects. So I don't think these characterizations mean much!!

    After all, one can say that "minimally invasive" penetration can still result in unwanted pregnancy!

    Thanks everyone. Howard

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  • Posted

    Hi Howard!!

    It seems most BPH/PCa sufferers have in common a belief that urologists become what they treat. “Patient Forum” contributions are difficult to follow for us down under. Here treatments are mostly medications and TURPs for BPH. Post-RP I found so many options on this site that aren’t even mentioned here. They are all identified by their initials. Our Urologists are mostly surgeons and they make their living mostly from that option if an advancement to PCa occurs. I don’t even know what IRs, PCPs or A-Fibs are.

    I was BPH treated by an arrogant out-of-date Urologist 1990 to 2015. Alpha blockers 2006 to 2015 and Duodart (5ARI dutasteride) 2013/14. PCa (3+4) and RP 2015. I changed Uro for the biopsy (2nd) and surgery. I now strongly believe the main blame for sub-standard prostate treatment here is the bureaucrats. They lay down a lot of option policy and are responsible for the poor level of data collection and research for what causes 3,300 male deaths a year and a tremendous loss of quality of life. Our Federal Health failed to support or recommend MRIs ahead of biopsies to detect the PCa. Risky BPH medication data is grossly understated and protected by a fake privacy policy.

    There is a great need for enhanced treatment, better supervision of medications and much more research, data collection and post-op support. Other lesser afflictions receive greater public and private funding. I have so far been fortunate with post-op PSAs but incontinence and other ramifications have been severe. My highest pre-cancer PSA was 3.8 and coupled with the 3+4 and only 2 positive biopsy hits make it impossible to now decide if my RP was appropriate. RARP should have been an option but was again never mentioned. Government and Fund costings have so much to do with how we are medically treated.

    BarrieH

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    • Posted

      Barrie

      I'm sorry that you have to deal with that. But in other country they do not have the option we have here in the US.

      Any BPH treatment she not be money it should be for the best of the patient and what he is concerned with

      Take care Ken

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  • Posted

    Hi Howard!!

    It seems most BPH/PCa sufferers have in common a belief that urologists become what they treat. “Patient Forum” contributions are difficult to follow for us down under. Here treatments are mostly medications and TURPs for BPH. Post-RP I found so many options on this site that aren’t even mentioned here. They are all identified by their initials. Our Urologists are mostly surgeons and they make their living mostly from that option if an advancement to PCa occurs. I don’t even know what IRs, PCPs or A-Fibs are.

    I was BPH treated by an arrogant out-of-date Urologist 1990 to 2015. Alpha blockers 2006 to 2015 and Duodart (5ARI dutasteride) 2013/14. PCa (3+4) and RP 2015. I changed Uro for the biopsy (2nd) and surgery. I now strongly believe the main blame for sub-standard prostate treatment here is the bureaucrats. They lay down a lot of option policy and are responsible for the poor level of data collection and research for what causes 3,300 male deaths a year and a tremendous loss of quality of life. Our Federal Health failed to support or recommend MRIs ahead of biopsies to detect the PCa. Risky BPH medication data is grossly understated and protected by a fake privacy policy.

    There is a great need for enhanced treatment, better supervision of medications and much more research, data collection and post-op support. Other lesser afflictions receive greater public and private funding. I have so far been fortunate with post-op PSAs but incontinence and other ramifications have been severe. My highest pre-cancer PSA was 3.8 and coupled with the 3+4 and only 2 positive biopsy hits make it impossible to now decide if my RP was appropriate. RARP should have been an option but was again never mentioned. Government and Fund costings have so much to do with how we are medically treated.

    BarrieH

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    • Posted

      Hi Barrie,

      I am very sorry to hear about your incontinence issues. I know it must be very difficult for you which is why it is so important for you to post your experience here to warn others.

      I was born and raised in Canada but worked my whole life in the US so I am fortunate to have good insurance. But we moved back to Canada a few years ago and are really appalled by the 3rd-world healthcare system here. In Canada it is controlled at the provincial level rather than the federal level but it is still run in a most barbaric fashion. I tried once to change my uro here but everything has to go through the family doctor who has no training in specific problems. She accused me of "doctor shopping"!! When i told her I reject the saturation biopsy of 64 cores being offered to me by the urologist she told me to get my teeth cleaned!! Terrible arrogance!!

      There are 2 systems of health care in Canada - one for the politicians and their close friends and one for the rest of us scum as they view us.

      Most recently we were shocked to see that the Ontario government is now cancelling annual physicals for senior citizens as well as cutting back on available procedures like hip replacements and cancer therapies for seniors. They will only offer pain killers and palliative care to most seniors. It is a conscious effort by the government to save on health care costs by getting rid of the seniors. Thank goodness we have good health care in the US.

      Those people who advocate for single payer should come here and see the barbaric nature of the system. It was so easy to fix the US system to give good healthcare to everyone but unfortunately the politicians lacked the will to do it and now we are fearful that the US too is heading for single payer.

      You should maybe post your response here as a new thread as it is very important for many men to read about your experience.

      All the best to you.

      Howard

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    • Posted

      I've heard many Canadian horror stories like yours howard. Sad to think Americans think it would be a good idea to let our gov. run health care. Trouble is, we'll all get stuck with it.

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    • Posted

      I worked for a major corporation for 30 years in the US and had the best possible health care through the company. But what always bothered me was that my company paid 80% of my premiums yet that benefit to me was not treated as a taxable benefit for me. I calculated many times over the years that if I had to pay income tax on that benefit then everyone in the US who did have health insurance could have been covered with great insurance IF that additional tax went to providing them coverage. I was politically active then and brought this up many times over the years to both State and Federal politicians. I used to say back in the 1980s and 90s that if something wasn't done the Left would eventually use the uninsured to push for a single-payer system and destroy the best health care system in the world..... and so we have today. I never understood why such a simple solution was never considered. i would gladly have paid the extra tax for the benefits I enjoyed knowing that everyone in the country had coverage. Recall how Congress voted to exempt thenselves from Obamacare right after it was passed!!

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    • Posted

      Just because Canadian system if falling apart it does not mean that single payer is a wrong idea. Most of the industrial world has some form of single payer system. And it works much better then what you have in US ( or Canada). The problem with Canadian and sadly UK system is that is slowly underfunded so the coverage is getting worse. The fact is that Americans pay at least 2x the average of the rest of the world and jet medical care is inadequate and spotty. Yes if you work for large corporation, which has leverage to negotiate good rate, you are safe. But that is exactly why single payer is far more efficient then private insurance. The power to negotiate lower rates for everyone and have decent coverage for everyone.

      BTW I worked for medical equipment company most of my life and lived in Europe, Canada, US and Asia, so I am very familiar with each system.

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    • Posted

      Does negotiating lower prices stifle innovation or effect care? If everyone gets cheap drugs will pharmaceutical companies continue to develop drugs? Would we be able to contemplate FLA if Dr. K could only charge $5K? Just thought, I don't want to hijack Howard's thread and turn it into a political discussion.

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    • Posted

      All good questions... How many of prostate BPH procedures are invented here in US and how many were invented elsewhere, where you don't have to pay "arm and the leg" to get medical help?No doubt that US market is the most lucrative, but lots of inventions are discovered worldwide... PAE was invented in Portugal, urolift, several procedures are from Israel, etc. CAT scanner was invented in UK, X-Ray was discovered by Roendgen - Germany... and so on.

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    • Posted

      interesting. i know someone in Canada who was in a bad car accident, multiple operations and hospital stays - cost maybe a million dollars. he paid nothing - tell him Canada's system falling apart. australia has a combined government private system i think that's the way to go. plus stopping the corruption in all systems where they overcharge for everything

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    • Posted

      Free market competition is the answer with the government just providing safety checks and guidelines. Otherwise single-payer government graft and corruption, nepotism and so on causes at least 50% waste. Only competition will keep prices down where there is a profit motive. But of course the government has to oversee quality control. Monopolies always lead to reduced service, poor service and massive costs, whether government monopolies or private sector.

      The Canadian health care system does have good emergency care like your friend got but for any elective procedures it is Third World all the way - especially for cancer treatments.

      It is not free here - the massive extra personal income taxes if used for premiums instead where the individual can choose among competitive providers would go along way further.

      Just ask why Canadian politicians and wealthy Canadians go to the US whenever they need life-saving care! You don't see wealthy Americans and US politicians coming to Canada!

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    • Posted

      ah, the wealthy Canadians go to US, so it must be better healthcare ...for 1% of the population, and for the rest apparently not so much. If it is true that "competition will keep prices down " and " single-payer government graft and corruption, nepotism and so on causes at least 50% waste" then how do you explain that US system per patient cost about double then the average of the rest of industrialized nations? What you say sounds good on paper, but is not supported with facts.

      Many single payers systems work great and are far more efficient then what US has currently. In fact, US does have single payer for retired - Medicare and it works fine with admin cost substantially lower then "competitive" private version.

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    • Posted

      The US medical system is in serious need of tort reform - the need to carry high-cost malpractice insurance for everyone connected to the medical system adds about 30% to the cost of everything. That is one area where Canada does lead the US as lawsuits in Canada are few and far between. Another aspect of this is that in Canada the lawyers cannot accept cases on contingency as they do in the US so people are discouraged from bringing frivolous law suits since they have to pay up front. The US politicians always talk about tort reform but they never do anything about probably because most of them are lawyers themselves!

      I've travelled the world and wherever I go I always see 2 systems of medical care - one for the super rich and politicians and another for the rest of us. That is why forums like this one are so important where we can help each other and skirt the system. take care. Howard

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    • Posted

      To all site followers!!

      It seems I diverted a lot of this post’s impetus from individual patient/doctor/specialist mistakes to a comparison of individual country’s health systems. These issues can never be resolved. As indicated politicians are only interested in surviving their next test at the polls. Modern techniques allow them to pinpoint their numerical weaknesses. The more men complain loudly at all the weaknesses in prostate treatments the more streamline these will become. Other issues and other medical complaints get more attention than they deserve while we got and get less.

      Post RP I sent hundreds of requests for better data collection and research into medicated BPH treatment to politicians, urologists and influential men. I got only a couple of responses and these were only a rehash of the Health Departments position. One particular drug had only 6 adverse PCa events posted. These were not attributed to the drugitself and no Gleasons were collected This drug is likely being prescribed to tens of thousands of likely PCa prospects. So the question was what data is being collected? What do they know and what do they want to know or for us to know. Not answered yet.

      Australia has a rapidly growing post employment population. Most of these have not been required to contribute to their retirement sustenance or maintenance. The Federal Government has fully accepted this responsibility for their standard of living. Men here used to die in their 60s & 70s. Now it’s 80s & 90s. The only way to offset this situation is for Government to restrict other costs. So in 2006 alpha blockers and 5ARIs were a cheap BPH treatment. That is what I got. In 2015 our Federal Health would not recommend or support MRIs for PCa detection but suggested risky, inaccurate (since 1990) U/S guided biopsies. In 2015 RARP was not even suggested.

      With increasing longevity every country will experience problems servicing expanding medical needs. Privatisation of all pharmaceutical facilities and their billion dollar profits hasn’t helped. The need for better BPH PCa data collection, research and availability of today’s treatments will only be achieved if those of us who have suffered from cheap and nasty treatments bellow. One of our political parties once had a motto “keep the b******s honest” We have to do that for all our brothers that follow!!!!!

      Barrie H

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    • Posted

      Good morning Berrie

      Here Here Well said. Some are going to go the cheap way and not do what we would like them to do. We have to fight for what we will will do the best for us.

      You have to take charge of our problem and not be forced into a procedure that we don't want. Some doctors will not do all the test and then we are the ones that have to deal with the problem.

      There was one man on here that e-mailed me He was told that he had cancer of the prostate and they wanted to do a Turp to remove the tumor. The doctor did not do a DRE or a PSA so they never told him a Gleason score. He just wanted to get him to have the procedure and that was it.

      You have to be careful and take charge. Make sure you have all the test you want and if your doctor wont. Time for a new doctor.

      Have a good day....Ken

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    • Posted

      Thanks Barrie - no need to apologize at all. One of the strengths of this forum is that a particular thread will start off in one direction and then take unanticipated twists and turns as more people contribute. In your case you took my thread into a very important direction for all of us to learn from and consider when it comes to our personal responsibility to care for ourselves. Thanks for bringing this forward and I hope the discussion continues here - especially given that we are from many different countries and can be open and honest about our healthcare systems. Howard

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    • Posted

      You are correct and logical as usual Unckle. Doctor K pays $5,500 for each laser tip he uses. He has to inventory them. The procedure room cost another $3,000 each procedure because of that high priced Sieamens Skyra 3T MRI he uses but that machine cost over $3,000,000 and is the best in the business. Then there is the other costs of conscious sedation which is more expense than a valium cocktail, And then the personnel cost and his guy Donnie is so experienced he could be the Doctor.

      I was not happy with a $20K price tag and all the unknown I dealt with as the first guy for BPH until I understood the cost of these FLA procedure.

      The hospitals and liability insurance companies are the ones making the killing and Tort reform is badly needed in medicine. Just "loser pays" changes alone would stop a lot of frivolous law suits in everything. But we need a way to really punish malpractice issues. With medical mistakes being the number three leading killer each year, us old people are scared to go to the hospital.

      So far, I have had good money spent for good results. Hope you are doing well.

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