HIFU?????

As I read I don't see many if any comments on the HIFU treatment. This is a procedure my husband and I are seriously considering. Tom has a MRI scheduled in a few weeks prior to a possible HIFU. I was just curious if any of you have looked into this and what your thoughts were! Thanks~

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Hello,
My husband had hifu down in Puerto Vallarta almost 4 years ago. We are so glad we bit the bullet and paid for it, it's been worth every penny. He did have some ED after treatment, the doctor recommended he take 10mg cialis everyday to keep the blood flowing in the vessels to hold them open so they don't collapse. It took a couple months to an erection hard enough, within about 8 months he was fully back. But he never had any urinary problems or pain or anything. It was just two and half hours asleep on the table, then a hour to wake up and then we chatted awhile with the nurse from Chicago and he took all the patients back to their hotels. I keep in touch with 3 other men's wives who had hifu and all of us feel like we are really lucky. Getting an MRI is really good, as then the doctor can map exactly where the cancer is, my hubby didn't get that. International HIFU is very professional, we get surveys all the time asking about his progress/status. I didn't have the luxury of asking on the web about it, all the cancer sites would erase my questions, so I was nervous, "was it a scam" I would fear. And then it turned out to be the best thing I ever did.

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I had Targeted Focal Therapy (TFT) using cryotherapy. The approach is very similar to HIFU, but instead of using ultra sound to kill the cancer, cold is used. You start out with a 3D Mapping Biopsy to precisely locate the cancer and the treatment using micro needles, so as to treat only the cancer. Cryo is approved for use in the US. I had my procedure at the University of Colorado, Denver. Here is their website. http://3dprostate.com/ I am 2 years post procedure and I have no urinary or sexual side effects. My PSA is stable around 1.

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To HIFU wife......I love your alias :) Thank you for your encouragement!! Just today I was having second thoughts....is this really the way to go??...the money, how will we do it,?? that sort of thing and now reading your post I feel much better. We will be seeing Dr. Wheeler(he wrote MEN AT RISK) in Sarasota, Fla. for the MRI and if the HIFU is appropriate for him we'll go to Cancun. We live in Portland Oregon....a little trek :)
I've read some things about where the PSA should be after. What have you heard about that magic number if there is one? Thanks again for the support!
HIFUWIFETOO ;)

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The Cryotherapy is a choice we strongly considered, we are heading in the direction of HIFU now. When T's Urologist told us his treatment options he said Cryo. would cause ED in 90% of the cases. I'm glad to hear he was wrong in your case. Maybe it had something to do with T having 11 out of 12 cores positive I don't know. Would you mind sharing your numbers before the Cryo.? My husbands are psa 6.5 Glea.3+3 and T1c
Thanks for writing.

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I am talking about focal therapy not whole gland cryo. The whole gland treatment can cause ED. Focal is designed to prevent these issues. Please read the University of Colorado website. It fully explains the TFT approach.

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I had 1 core 10% Gleason 3+3=6, and one core of HG PIN. Usually with Targeted Focal Therapy no more than 30% of the prostate can be treated. That is why the 3D Mapping Biopsy is required.It tells you exactly where the cancer is located and how much cancer.

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Please read my post regarding the focused laser ablation that I underwent. Similar in specificity to HIFU & CRYO but even less in invasive & no side effects to speak of.

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Does any one have the results of any long term studies that show the male "lumpectomy" to be more beneficial that AS? I believe the statistics are that even with a HIFU of part of the gland you still have a 30% chance of getting PC later.

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There is no magic number after hifu, just a steady one. The lower the better - if he was treating the whole gland.

Every year the statistics get better, there was a 30% redo rate, but that was with the old robotic hifu, now it's robotic plus manual, the machine tells the doctor there is more tissue and shows him where.

The cryo focal is really good, but there are only two places to get that done - without side effects, one is in Denver and the other is in NYC. Dr. S. Scionti is a cryosurgeon and he is an expert hifu in NYC, he was our hifu in Puerto Vallarta. Wheeler's patients love him too, he is with International HiFU still isn't he? That's important, because it means he has the latest machine, if he went out on his own then he has the old machine.

The statistics on surgery are too many side effects, "More than 95 percent of survivors had some degree of sexual dysfunction.
About 50 percent of survivors had urinary symptoms. " That is a cut and paste from cancer info link or Reuters from June 27.

I don't know how you get less invasive, as he certainly had no way of knowing the probe was up there, but I'm going to read your story dustoff97, interesting...

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Dr. Scionti was the urologist who assited Dr. Sperling with my laser ablation & I am seeing him in July for my first follow-up.

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That's great Dustoff, you are in great hands. With lazer or hifu if they missed something it can be retreated, but the added cost is of concern! Just wish the FDA would approve these, as they follow the hip. oath "first do no harm". It will be interesting to hear which mode Scionti prefers. He's a very relaxed personal guy, you can ask him anything. BTW, my husband was in the Vietnam war, but only spent a couple days in Saigon, he was at Clark in the Phillipines, he is very outdoor, very fit, so we think prostate cancer is genetic, and don't they say 88% of men get it?

Those statistics I quoted above were 10 years after surgery. It's just horrible what men have had to put up with.

tjw316 said "the money, how will we do it". My husband's answer is "it's the rest of your life we are talking about, how can you not find it?" I say, pay now or pay later. We all pay. You could send your results in to Scionti, ask him about focal cryo as insurance does cover that. It depends on where your cancer is located, if cryo can be done without side effects.

I just want to say one more thing, there are lots of new "hifu experts", doctors who have just learned the treatment as Scionti teaches hifu (there were 4 white coated men observing my husband's treatment), you don't want to be a guinea pig, they all charge the same, as International HIFU has a set price and they all work under them. Ask about experience.

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Thank you I will check out the web site. I haven't heard of that treatment. Did your Ins. cover it?

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Thank you I will. I appreciate it.

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You don't give much in way of stats. From what was presented, maybe he should consider A.S.

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If you call Scionti, ask him about insurance, I have a friend who said insurance covered most of it, ours was so long ago we didn't even try with insurance. There is a ins. company whose CEO had hifu, don't know which one, and so that company covers it. Ask International HIFU, they know which ones pay.

Ohiobill, Active Surveillance is so hard to do, the anxiety of testing constantly, plus personally I wouldn't let my husband have another biopsy. Yes, I've read that prostate cancer is so slow growing he most likely will die from something else before the cancer gets him. It's worth considering, if they have the temperment, his stats are great for it (6.5 Glea.3+3 and T1c). I think the biggest fear with AS is 'what if the cancer gets too big for hifu or focal treatment?'

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I have been AS for nine years; still have not a second biop. Don't recommend this, just saying. The tests I use; psa, psa%free and PAP-simple blood tests- I feel give me an indication of what is going on. From my experience, patients often panic. Aided by mds who see an opportunity for quick renumeration.
His psa of 6.5 is 'high', unless there is a reason. Do you know size of gland, if there is prostatitus, etc.??? If there is not more info, how did you/can you make an informed decision??
What is his age? How is his health, particularly heart, etc.? (life expectancy).
I think local treatment would be great, provided there are enough satisfied customers that do not have further problems. But it is all relatively new with few numbers, although several posts in this forum are encouraging.

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Hi all, Thanks for the input! My hubby just turned 58 he eats very healthy and exercises daily. He is in great health, he does have bouts of Atrial Fribulation every few years but checks out great with is Cardiologist.
So his stats are as follows with no symptoms at all. PSA shot up a few years ago and has leveled out now avg. 6.5. The staging is T1c and Gleason 3+3 with 11 out of 12 cores positive both sides affected. 1 core was 50% 3 were 30% 1 at 20% a few at 10 & 5%. His prostate volume is 19cc. The amt. of cores make me concerned!
We are scheduled with Dr. Wheeler for a MRI in 3 weeks(and possible HIFU) but we're reconsidering(just today).

Thanks for feedback...

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If doing "active surveillance" (and I am using the full term as the absurd use of abbreviations is confusing to new comers), never blindly follow the advice of conventional doctors. One must always use the tremendously successful arsenal of alternative therapies doctors are either afraid of recommending (although they use them themselves) or ignorantly brush aside due to lack of their medical education. A patient can never just sit around and monitor with testing; it is medieval and stupid.

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With the amount of core involvement, I think treatment is called for. Good luck in evaluating the newer procedures and finding the best person to use. Please keep us posted.

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tjw316,
His volumn is so small that hifu will be easy. Scionti hates the huge glands as they take forever and he doesn't want to put a person to sleep for too long. Sometimes the big ones need a TURP prior to treatment, but it's a special made TURP for hifu, not the big TURP.....anyway....I've never heard of such a small gland that is so affected. Yes, the amount of cancer found is concerning, he needs treatment. Wheeler really pushes supplements, which turns me off as we tried so many of them without success.

tjw316....please...don't get rushed.....he has plenty of time to make sure....

I doubt anyone just sits around and has tests when on AS, they all try one supplement after another.

good luck, and yes, keep us posted

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