Recommendations for someone living outside the US

Posted , 17 users are following.

My case may be relevant to a lot of people here, so hopefully good answers will help lots of people.

I've got mild but rapidly increasing BPH.

Like many of you probably, I'm overwhelmed with the number of non-medicinal treatment options (medicine hasn't worked for me very well).

I will have to self-fund the procedure since I don't have US insurance.  (I'm in Mexico)

So I'm thinking of the following basic plan of action:

1) Get quality MRI imaging done here.

2) Have a good local urologist look over it to look for middle lobe, other anatomical issues. etc.

3) Send the imaging to doctors in the US and elsewhere to see whether they think I'd respond well to their particular treatments.  I don't think too many of these treatments (apart from Urolift) are done in Mexico, unfortunately.

4) Somehow try to pick among the so many different treatment options based on their responses, costs, and of course all of your so-helpful responses on effectiveness and go do it.  Right now I'm mostly focused on Urolift, PAE, FLA, and aguablation.

It seems fairly straightforward, which makes me wary and want to ask those with so much more experience, does this seem like a sensible plan or are there things I'm missing/other factors to consider?

Thanks in advance!

 

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  • Posted

    Paul,

    I don't think MRI imaging alone will be that helpful, in fact it's not really part of the normal workup. The normal workup includes DRE (finger in the rectum), bladder scan (for post void residual), simple flow test, and sometimes cystoscopy. A bladder/kidney ultraound study is also a good idea. Your IPSS score is also important, and you can google it online and get a score in five minutes. More advanced but perhaps the most important in many cases would be urodynamic testing and ideally video urodynamics.

    As to the procedures you mention, Urolift and PAE are good non invasive choices but don't work very well if you have a large median lobe. FLA is new with no published trial data and I personally don't see the anecdotal reports  any better than the other procedures you mention. Aquablation has completed phase III trials but just starting out so I would wait until more real world data comes in and a doctor has performed at least 100 of them. Also, it's more invasive than the other procedures so you might want to try them first. My first choice now would be Rezum It's got a lot of trial data and a lot of uro's are not performing it so it should not be too hard to find one who has performed more than 100 procedures.

    But first things first. A lot of men go procedure shopping before they are confident with their diagnosis. You may need one of these procedures, or maybe there are other issues like overactive bladder or prostatitis causing your problems. Get a proper diagnosis first.

    Lastly, depending on your symptons and residual, there is self catherization (CIC). It may not be a permanent solution but it can buy you time until you make the right decision and will protect your bladder and kidneys as well as any surgery. It also has the potential to rehab your bladder but that's not a guarantee.

    Jim

     

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    • Posted

      Forgot to ask if you have done a trial with Flomax or any of the other alpha blockers or perhaps Daily 5mg Cialis? The usual progression is to try the drugs first, see if they work and how you tolerate them, and then move to surgery. Some opt for Proscar to shrink the prostate but it has its plusses and minuses. Someone mentioned "3T MRI". Unless you're going with FLA I would save your money because uro's will not require it.

      Jim

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    • Posted

      Thanks very much for the great info, JimJames.  I did try Flomax and it seemed to help a little, but the side effects in terms of feeling tired and fuzzy and lower energy all day were brutal.  So I'd go a long way to avoid it. 

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    • Posted

      Paul, there is also Daily 5mg Cialis. You may have better luck with its side effects or not. Might be worth a try. And again, if you want to enter the land of the brave smile, there's self catherization (CIC). No one was more of a wimp than myself in the beginning, but that passed quickly and it worked out very well. At a minimum it will be you time to make a decision by keeping your bladder volumes down thus keeping your bladder from stretching and protecting your kidneys.

      Jim

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  • Posted

    Paul 5555,

    Your plan is excellent. 

    I had BPH, biopsy was negative , so I was lucky to be clear of cancer

    Each of our conditions are unique and your search for a well trained and experienced Urologist is an absolute necessity. My situation was an enlarged prostate (85g) which was creating an inability to void and causing significant urine retention. My only symptom was increasing difficulty to urinate enough. As a result I self cathed for about 10 months (medicine did not provide relief) . During this time I did some research and my Urologist was most confident that a TURP procedure was my best option. He did not think the other alternatives, such as Greenlight lazer, HoLep, Urolift, etc., were as effective in my situation. I did get a second opinion which agreed with my original Urologist. This added opinion was critical in my decision . 

    In your case , I suggest a) identify symptoms with your chosen Urologist, b) get a good measurement of size, c) have a PSA test d) if size, PSA and other indications exist get a biopsy done to determine the best treatment. 

    I am not a Doctor , however, it appears my problem has been addressed and it is seven weeks since having the TURP procedure. Make no mistake, TURP is surgery , and any surgery puts stress on the body . After two weeks I was healing well and stopped any self cathing one month after the TURP. So far, I am happy with the progress and ability to urinate in a normal manner. I hope this helps, and I wish you well in your problem resolution.  

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    • Posted

      Awesome Caddie.  Thanks very much.  One thing I'm leery of  is that the urologists will point me away from the radiological soutions, even though they might be the best option for me. 

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  • Posted

    I commend you for taking control of your own health and not only relying upon the opinions from one or two doctors. When seeking opinions from anyone (doctor or lay person) keep in mind we all have our own biases, especially if we have already had a procedure. If we are happy with the results we tend to be supportive and want to tell the world how wonderful it is. When things don't go well we may hear of the horror stories, but perhaps not the so-so results.

    As I worked through this process starting 5+ years ago I researched the available procedures and those in trials, spoke with many men, doctors even reps from some equipment manufacturers. The only thing I was fairly confident about was that not all 'BPH' type symptoms are alike. They can have multiple causes, complicating factors and as a result the physiology can be different. As such, a treatment that may work well for one may not for another and doctor skill and follow-up can vary greatly.

    Personally, I spent years trying to understand MY condition. Unlike some, I had a 'small' gland (<30cc) yet symptomatically seemed worse than some >100cc. I had MRIs (for PCa active surveillance), CT, ultrasound and cystoscopy. I also had numerous urine tests and cultures of seminal fluid trying to determine how much prostatitis was contributing and if there was a bacterial infection that simple urine cultures could not detect.

    My only suggestion to you - don't rush into anything. Evaluate the information you receive and factor in their bias. I personally don't believe there is any one 'gold standard' (and I hate that term). Any doctor that used that phrase with me was not revisited nor considered. Any of the treatments you listed may work for you and they all come with potential complications. Even though some will say the complication rate is only x%, if you are in that % it is 100%. Understand the potential problems, have a plan to deal with them should they occur so you are not left floundering/scrambling at a potentially vulnerable time. 

    Good luck!

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    • Posted

      Thanks very much Tim.  Yeah, I think that if I'm guided by a good urologist down here to all the best imaging and tests in order to come to as thorough an understanding of what my particular problem is as possible, that'll be money well spent. With that clear understanding of the situation, I'll then be best prepared to chat with the doctors who are trying to peddle the solutions they do as the best one.   I don't have zillions of dollars so I'd really like to pick the right thing first and minimize any possibility that the reason I did the wrong treatment is because I didn't do enough homework. 

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    • Posted

      Since I have both PCa and LUTS (I use that term vs BPH since most of my issues were not caused by traditional hyperplasia) I opted for FLA in mid Dec 2017. I had been on AS for 4.5 years and there were a lot of datapoints that went into my selection of that procedure vs something else - most notably, it was the only one that could potentially address both issues with the lowest probability of the one side effect I considered the worst and wanted to avoid - incontinence.

      The procedure was simple, absolutely no pain during or after. While I had a complication after the catheter came out that required another catheter for an additional 3 weeks, which delayed my recovery - after that I quickly healed and am doing well - and no incontinence!  My 3 month PSA was 0.2 - a 90% reduction, so all in all - a good start. It is still very early for me, and PCa being multi-focal, it could pop up again, but for now - I am optimistic and happy with the results.

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    • Posted

      I'm doing well Stan. Fully healed and feel totally normal. While a little hesitancy has returned first thing in the morning, it is still a lot better than it was 1+ years ago. Considering 50%+ of my gland was ablated, it could take many more months for the gland to reform and a new baseline is set.  

      How about yourself?

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    • Posted

      Im happy of you  Tim.  You are really exception  in results . All patients with very small prostate  are problematic  after FLA -except you .   This is my record  of you  in my excell table.  Pls add  , or change data if neccessary . Thanks a lot , Stan.

      Dec. 2017 , PV<30 ml, PC, ablated 50%, fistula -longer recov.,  FC 4 weeks ,fin. good results, PSA now 0,2 .

       

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    • Posted

      Dear Jim, 

      below is my record of you. Pls  add  or  change data , if necessary  How can you judge result  - mixed or failed ?   My Best wishes , Stan  

      May 2017  , PV 30ml, after 22ml, PSA 1,9,poor results. Repeated FLA -Jan. 25, 2018 - better PF, 0 PVR, but RE , mixed results , due to very small prostate?

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    • Posted

      Your data for me is correct. I don't think anyone knows at this point if there is any correlation in size of the prostate and ultimate results. So few people have had this procedure, fewer still have reported primarily early results which are very subjective. For me, since my primary impetus was the PCa and any LUTS benefits secondary my opinion is currently biased towards the cancer results. If I did not have cancer and only was addressing the LUTS then my opinion may be different - it is all relative.

      The one total WAG that I had was perhaps with smaller glands the ablated tissue makes up a larger percentage of the overall remaining volume and as such perhaps there is more pressure from the surrounding stroma tissue. Over time, as the ablated tissue is absorbed and the gland reforms perhaps the pressure is reduced and symptoms improve?

      I am hopeful that my urinary symptoms will continue to show improvement over the next several months. I will get an MRI in October which will be 10 months post procedure to get my first look at how it is progressing, but for now I am satisfied with my current status.

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