FLA

Good to hear, Steve.  Can you describe what your recovery was like.  I have spoken with John and Ross and am interested in how things went for the other brave "pioneers" of FLA.

Thanks, Rick

@steve: "One other reason for the FLA decision was the Dr. Dr.K in Houston took the time to explain the procedure in detail and gave me a honest estimate of what my chances were going to be"

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Hi Steve, 

Happy you're happy with the results! For other men in your position trying to decide, could you share with us what Dr. K's "honest estimate of what your chances were going to be" ?

Also, could you detail a little more what your issues were prior to FLA, including any retention, and what issues were resolved, and what issues if any were not. 

Jim

After i sent my MRI to Dr.K, he called and aked me what my expectations were for the FLA procedure. I told him I would like to be able to empty my bladder and get off the medications. He said there would be a 70% chance of that happening. After the procedure was done i could tell from our post procedure discusion he was extremeley optimistic i would have some very good results. Before the procedure I had to be very careful on what i ate and drank. I.E. no coffee, spicy foods, alcohol. i was also taking a 8mg Rapaflo prescription. My whole life revolved around my prostate. As stated earlier my results have been very good. Dr.K still calls to check in. He is glad my results are what they are, but he also says I may have some small setbacks for the next few months. I am now in the process of weaning myself off the Rapaflo with the Dr's blessing. I researched every procedure, Rezum, urolift, and Turp. Due to my prostate size i was limited to just the Turp. I beleive i made the right choice with the FLA. Dr.K is in the business to make a living, but the impression i got he truly wants to make a difference and would not do a procedure if he did not think tt would work. 

I like the fact that he was upfront with you regarding your expectations. 

What were your symptons like prior to FLA? Frequency, urgency, etc? Do you know what your residual (PVR) was before and do you know what it is now? Just trying to get an idea of the before and after.

Jim

Quite a lively discussion. I was having BPH issues and was looking into PAE but with further tests it was determined that not only did I have a large prostate, I also had Gleason 6 prostate cancer. My uro said the only obvious choice for me was a prostatectomy. He even downplayed all the side effects (which he didn't talk about unless I brought them up). However after months of research (including FLA) I went with HIFU. My procedure was August of last. My last MRI showed the HIFU was successful at destroying the cancer (however I will have to have followup MRI tests to make sure the cancer does not come back. The HIFU procedure also took care of my BPH issues. I sleep through the night, No urgency issues, and no frequent trips to the bathroom. Best of all...all sexual functions were operational the very next day.

I'm not trying to take anything away from FLA, just wanted to offer a personal account of another procedure that has had amazing great results for me.

Thanks for sharing, and congratulations of killing two birds with one stone! That's really how FLA for BPH came about, according to Dr. Sperling, who observed BPH relief in many of his FLA for PCa patients. Do you know if anyone is doing HIFU  specifically for BPH? Is it MRI guided like FLA? What was the recovery like? Also, maybe you could tell us briefly what were your BPH symptons like prior to HIFU, like urgency, retention (PVR), etc, and what are they now?

Jim

HIFU seems promising for Gleason 6 cancer; it may also help with bph symptoms, although I'm not sure there are any studies yet to support that. I don't believe it is covered (as far as I know) by any insurance company.

I have heard tales of men spending upwards of $15000 out of pocket for the procedure

Hahaha, I paid $25k! But (so far) it has been worth it. FYI, I had an erection the next morning after my procedure. It wasn't very comfortable as I had a catheter but it was comforting to know everything was working. To answer JimJames, HIFU is MRI guided.

I posted my complete and detailed day to day experiences (both days before and weeks after my procedure on this site.

In the search box, type in HIFU. Go to page three and look for and click on "HIFU experience".

You will see all my symptoms and I also answered questions along the way. This is a very detailed and personal account of my experience including prep for the procedure, moments after waking up from the procedure, travel challenges with a catheter, removing the catheter myself, and re-catheterization.

Sounds good Steve, but if you aren't already, you should follow up with your urologist and have your residual (PVR) checked. After all your efforts, you want to protect what you've gained. 

Jim

Absolutely;

it's important to have regular visits (at minimum yearly) with your urologist regardless of the treatment you have chosen to assure that you are, in fact, emptying your bladder; silent obstruction can potentially occur after any treatment of your prostate.

I hope they do more studies regarding long-term follow-up and document the AUA symptom scores and voiding parameters to show a definite improvement. 

I also hope they are able to figure out a way to make it more cost effective; most of the patients in my practice are unfortunately not the super-yacht owning variety!

@JerseyUro: Definitely a promising treatment; although I believe that in many cases, you can almost look at Gleason 6 funny and it runs away  [smile]

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Jersey and ES28567,

Humor aside, isn't the debate whether to even treat lower Gleason scores versus active surveillance? So in the case of HIFU or FLA for PCa, these newer procedures seem to fill a niche treatment for low/moderate grade cancers that arguably could just be watched. 

Jim

It is a huge debate re: Gleason 6 disease. 

There are many prominent studies/authors who recommend expectant management (or following regularly with biopsies), and I believe in most cases Gleason 6 can be safely watched- although younger men may be hesitant to do so.

Many other countries don't even screen for PSA!

This is one of the reasons I'm hesitant to get a 3T MRI! I'm 70, have a PSA under 1 as of last year, and really don't want to know if I have a low grade cancer In fact, if I read the latest guidelines correctly, the fact that my PSA was under 1 in my 60's mean I really shouldn't test anymore moving forward. Do you agree with that? My old uro, on the other hand, wanted to test yearly.

Jim

PSA testing is certainly and evolving process; the guidelines seem to change every year!

For someone with a PSA of less than 1 and an age >70, the chances of developing a clinically significant prostate cancer is very low.

There are various nomograms that your urologist can review with you that demonstrate your estimated chance of cancer; it may be sufficient to know that it is VERY low.

Thanks. Given my PSA, age and family history, etc, I am much more concerned with cholesterol than PSA. I just read about many men who seem to have their lives turned upside down over a very low statistical risk of prostate cancer. Don't want to join that group but I think membership can start by too agressive cancer screening including unecessary PSA testing.

Jim

Rereading through the posts, I noticed I did not directly answer a few of you questions.

I do not know of HIFU being used if the only issue is BPH. It may develop like FLA, starting out for prostate cancer and then evolving into a treatment for BPH. But that comment is just speculation on my part.

My BPH symptoms were:

Unable to completely empty my bladder (which was causing my bladder to become stretched.

Median lobe was starting to block the bladder neck

During the day I was constantly going to the bathroom 2 to 3 times/hour.

Many times I felt I needed to to go again almost immediately after just leaving the bathroom.

Night time was not bad. Only 1 or 2 times/night.

The stream was barely acceptable to barely a trickle.

The urgency was pretty intense.

All that changed with the HIFU procedure.

Let me know if you have any other questions.

Hi,

Thanks for the update. I haven't had a chance to read your whole story yet, but it sounds like you got your money's worth, solving your bph and keeping your erection to boot! Were you able to keep your ejaculatory function at all?

I just read a comparision of HIFU to FLA on Dr. Sperling's site, so there could be some bias since Sperling only does FLA. His take was that HIFU by it's nature is less focal and therefore takes out a lot more tissue, with the results for PCa comparable but with significantly less sexual side effects from FLA. The fact that more tissue was taken out may be at least one reason your bph seems to have resolved so well. 

Have you been following up with a urologist? Do you know what your residual (PVR) is? If not, good to keep track of it so you don't lose any of the gains you received from HIFU.

Jim

PSA testing or not testing is such a fine line. I for one think it is a good thing in most circumstances. I personally think if a man is having BPH issues or men over 40 just to set a baseline for future tests would be two examples. I have read too many stories of men's lives (and their wife's lives) being ruined because their country did not do PSA testing. So sad.

However, someone like jimjames of 70 yrs. old, I would not test if I were him. Statistically I think he will pass away from old age or something else rather than Pc.

In my case, the PSA test helped me determine what course of action was best for me. My PSA was 18.5 and while I could have opted for active surveillance, that would not have addressed my BPH issues. Also, the PSA test (after confirming "areas of concern" with a 3T MRI) lead to a MRI guided biopsy which confirmed the Gleason 6 cancer.

So my decision to take action was based on the location of my cancer (close to the seminal vessels) which presented a higher probability of metastasizing down the road. Also, AS would not help me with my BPH. So I am a firm believer in PSA testing in most cases. (But I am just speaking based on my personal experience and the stories of lives saved from testing (and lives ruined from not testing). I will always opt on the side of better safe than sorry.

One other point, I have heard urologist confess that active surveillance is actually much better for them financially. They get to perform and get paid for multiple PSA tests and biopsies (and who knows what other tests) for years and years basically turning their patients into cash cows and if and when the cancer moves up the Gleason scale...the urologist is ready for the final payout. I'm not making this up...you can find this on YouTube.

@ES28567 I have read too many stories of men's lives (and their wife's lives) being ruined because their country did not do PSA testing. So sad."

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On the other hand, I have read many stories of men turning their lives upside down, living in fear and anxiety, and going from one doctor/treatment to another for mutliple biopsies, etc. all because of elevated PSA's that turned out to be false alarms.

It is a difficult and complicated situation and I guess a lot of the decision depends on the patient's philosophical outlook. My last urologist was in the very conservative camp. Yearly PSA's (possibly more, forgot), kidney function tests every 6 months, a DRE every 4 months, and at least two MRI's for suspicious (turned out to be nothing) shadows on his bladder scanner, and more. 

He told me his approach "was saving lives", and I have not doubt that he did save some lives, but he was making mine too stressful. I ended up leaving him.

Jim

Yes, I have full ejaculatory function. However it is slightly different. It is not quite as strong regarding the contractions and what comes out has a slightly different viscosity. The pleasure value is probably a 9 or 9.5 on a scales of 1-10 with prior to procedure being a 10.

Not bad. Not sure mine is even a "9 or 9.5" compared to my younger days, and I haven't had any prostate surgery or procedures  

Curious if the subject of sexual function and retrograde ejaculation came up before the HIFU, and if so what the doctor said.

According to Sperling (again he may be biased because he does FLA, not HIFU) -- "HIFU destroys half the prostate containing the tumor while FLA just destroys the tumor and 10mm beyond".

And while he doesn't mention retrograde ejaculation specifically, Sperling goes on to say that return to baseline potency at 3 months is 100% with FLA but only 52% of HIFU patients returned to baseline potency during the same time period.

Jim

Hi Jim, While Dr Karamanian maybe also be biased, he gives a very informative talk on youtube where he discusses both HIFU and FLA and explains the difference in ablation zones/margins etc by way of MRI images. It's a very interesting talk with slides clearly illustrating his points. But as virtually all outside links get moderated around here, I would recommend you search youtube for

"Prostate mpMRI and MRI Guided Focal Laser Ablation (FLA): Preserving Quality of Life"

He shows quite clearly how the ablative margins are way greater using HIFU than laser. However it does seem to be another very promising and effective treament for PCa and BPH but I'll allow Dr K to explain the difference as he does so way better than I ever could and it'll certainly answer all your questions too.

Also, if I am not mistaken, ES28567 had an interventional radilologist perform his HIFU as it was MRI guided wherea uros use ultrasound? 

Ross

Jim,

I think your uro might fall into that group that turns men into cash cows. Good for you, I would have left him too.

I know, without a doubt, many men freak out with an elevated PSA score. PSA test is only a tool and needs to be used responsibly.

When my score came back 18.5, my urologist wanted to immediately schedule a biopsy. And while I believe in better safe than sorry, before I agreed to jump on the table, I insisted on a 3T MRI. (I also insisted (if needed) on a MRI guided biopsy). If the reading had come back with no areas of concern, I would have refused the biopsy. Unfortunately, there were areas of concern so I agreed to the biopsy and the rest is history.

If a man doesn't want to know, I think that is his prerogative. However, I think at least after 35 yrs. old it should be offered and covered if elected. My understanding is the PSA score by itself is not of much use other to give false security of false worries. However, as a baseline to watch and see if the score goes up over years or with other tests when PSA scores are elevated has great potential to save lives and in my case quality of life.

I think the best thing every men can do is research. They must be their own best advocate. They should talk with their doctor and decide what is best for them. (That may includes getting the opinion of two or three doctors/urologist) and then decide what is the best course of action based on age, symptoms (if any) and family history.

Just a side note: i did months and months of research and talked to three different urologists about my test results. (The very first urologist misdiagnosed my condition and recommended Greenlight to take care of the BPH. I would still have cancer (close to the seminal glands) had I solely taken his advise!).

Every man must find the answer right of him based on his personality, age, partnership status, and circumstances. And ultimately no one can make that decision but him.

Unfortunately, none of us will really know until years down the road if the decisions we choose are correct.

Long live the prostate! Lol

Ross,

I'll check it out. Thanks.

Jim

ES,

It sounds like you thought and researched things through and did right by yourself. My PSA has always been below 1, no history of cancer in my family. Plus I'm 70.

If my age, PSA, and/or family history was different, I would be more vigilant re PCa. It's just that my last uro was a little too much so for me, and frankly I had other things to worry about.

In the beginning, I guess I appreciated all his care as I had just started self cathing and was kind of a mess both physically and emotionally, after having left a big teaching hospital practice where they conveyer belted me through the process which resulted in me ending up with a very bad case of epidiymitis. But later, all his tests, etc, became too much.

Don't know if I was being a cash cow, or he was just practicing overly defensive medicine, or if he really believed in what he was doing. Could be a little bit of each.

Jim

There was no history of prostate cancer in my family either. I guess I was just the lucky one. After I was diagnosed with prostate cancer, I learned that my father had several biopsies but no cancer was ever found. Also, My brother does not seem to have any prostate issues.

As I mentioned earlier, if I were in your situation, I would do the exact same thing as you are doing.

ES,

Appreciate the support. Whether it's BPH or PCa, it can be a confusing minefield out there, especially in the beginning. In my case, the self cathing and BPH had a bumpy start by ending up working very well once I had the knowledge and confidence to take the lead. And in a similar fashion, you did your due dillegence and took care of PCa on terms you were comfortable with. Yes, "long live the prostate" and long live the power of knowledge.

Jim

Ji