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Prostate HIFU

Posted , 12 users are following.

carolyn96211
carolyn96211

Have any of you guys out there had HIFU it a relatively new procedure, my husband is having it done next week

Any comments please

0 likes, 48 replies

48 Replies

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  • Dawnay
    Dawnay carolyn96211

    Posted

    Hi Carolyn

    About 9 years ago I wrote a similiar letter on line and heard from a lady whose husband had HIFU 12 years prior in Belgium.  She gave me the confidence to go to Mexico (we are Americans) to have it done, it was quite scary, as I had to pay 25,000. dollars prior to going.  We met a lovely American urologist, Dr. Stephen Scionti from Sarasota, Florida down there..... and it's without a doubt the best decission we ever made.  The procedure was completely pain free, took 2 hours, the only reason they put the patient to sleep is to make sure he doesn't move.  The catheter was in for almost 2 weeks, and we were told it is to dispell the ash that is left from burning the gland, and also a few blood clots, it all came out in the catheter, without the catheter his urethra could get clogged.  I am sure the gland is swollen afterwards too.  The catheter is no problem. 

    HIFU was invented in 1941.... and there is a foundation working to get it approved for all kinds of diseases, like Parkinsons, Epilepsy, some 42 diseases, and almost all cancers could be treated as well.  It's the Focused Ultrasound Foundation.  In Switzerland they have treated many people with brain cancer!

    Anyway.... there is one warning... at first he may find it difficult to get an erection, that is because things have been rearranged when it heals, do not fret!  Our doctor prescribed Cialis, 1/2 pill taken each day "to insure that the vessels stay open while healing".  It didn't do anything sexually to him, but made him heal with everything working.  It did take him about 3 months to fully be back to norm. 

    We've sent in many friends for the treatment and actually only one said he had the same problem after treatment, the rest said all systems were fine.  I've NEVER even heard of any incontinence at all.

    The most important thing is to make sure your doctor has had lots of experience, mine had done 200 at the time, now he has done 2,000.  But.... lots of experience does not always have the best results, I hope you talk to other patients he has had.  It takes skill to read the ultrasound.  Your husband has an added advantage, he has a MRI, the two together give the best results.

    I am sure you will be one happy girl, it will be hard to believe anything at all happened to him after he gets the catheter out.

    Best wishes

    • Dawnay
      Dawnay

      Posted

      Oh, by the way, do NOT expect his PSA to be zero, because HIFU does not get the whole package of glands that produce PSA he will always have a reading, but the reading should be lower and stay low, a substancial rise means a possible redo.
    • carolyn96211
      carolyn96211 Dawnay

      Posted

      Hi Dawnay

      many thanks for your positive post.. I'll keep you all posted ..yes getting slightly fretfull now as is my husband..but your letter made me cry only with good feelings..

      my husbands psa readings were low only 1.8 so our nurse said they will probably check this each time with a MRI as well .. 

      Surgeon very good he also does this procedure with a surgeon from UCL.(university collage London ) Which is one of the best hospitals in the uk with the most advanced new treatments and the best surgeons.. So I feel happy..

    • carolyn96211
      carolyn96211 Dawnay

      Posted

      Hello again Dawnay

      can I ask you how long ago your husband had HIFU?  and did you mean it took 3 months before he could get erections or that it took him 3 Months to recover from operation procedure and feel well in himself ..

      Also is your husband remaining cancer free.

      many thanks..

       

    • Dawnay
      Dawnay carolyn96211

      Posted

      Yes, he is cancer free and perfect as the day I got him.  We had the treatment 25 days after biopsy.  So, 9 years ago.  The first week after the treatment his penis laid on the bed like a dead fellow.... it was quite devastating!  But as soon as he took a Cialis it had life, and our doctor reassured us that all would be well, but to take 1/2 a day - as some vessel had most likely gotten a crimp (like a gaden hose) in it, to keep the vein open with Cialis, I really don't remember how long he took them, a month I guess...and we had sex at one month, but it was not too strong, at 3 months all was well....it was a slow process to get to be like he was prior.  But it will come back!  With surgery it could be gone, the vessels get removed, cut, damaged beyond repair

      When we were told my husband had cancer his local uroligist told him he had one month to have surgery, his cancer was right next to the wall of the gland and would most likely spread outside the gland in 30 days, which also meant that he would take the 'whole bundle' and leave him  in diapers and without erections.  So you can see we were in a mess of thoughts!  going HIFU in Mexico was so scary and paying in advance to a  stranger! 

      Dr. Stephen Scionti traveled out of the country for 10+ years treating men with HIFU, he has the biggest heart, he knew he was saving them. There were 4 U.S. doctors in attendance learning how to do it.

      And I think we can thank him for the FDA approval, the FDA knew too many of us were learning about it and how wonderful it is.  Honestly, your husband will go in for treatment, wake up groggy and walk out wondering if they actually did anything at all.  Only the catheter will assure him that he didn't just take a nap! 

      I've heard about where you are going, the UCL.... and you are right, that is the cream of the crop!!!! 

    • Dawnay
      Dawnay carolyn96211

      Posted

      Carolyn,  I forgot to answer one part of your question....We went out to lunch right after the procedure...he felt groggy from the anesthesia but that was all..... one guy told me he woke up with an erection after the procedure.  No one has said they felt badly, but you will be told no heavy lifting for a month.  However, my husband shoveled snow within two weeks as he forgot the warning. 
  • ES28567
    ES28567 carolyn96211

    Posted

    This is all good news to hear! HIFU was recently FDA approved in the USA and even though it has been successfully performed for more than 12 years (over seas), most insurance in the USA are still calling it an "experimental or investigational" procedure so they don't have to cover it. When I was diagnosed with cancer, my urologist only recommend a prostatectomy (because that is what he does) and downplayed all the side effects and said he doubted I had any other option other than active surveillance. I looked into proton therapy (which insurance also plays the "experimental" card to get out of covering it). I have talked to many people who have had the procedure and are happy with their results. While I think proton radiation is better than photon radiation, it is still radiation and so my final choice (if I can get my prostate to shrink down enough) is HIFU.

    So sorry your husband has cancer, but so happy he found HIFU. Please, please, please, come back and give us a day to day update (with positive or negative experiences) at least for the first two weeks and then monthly, so others will know what they might go through. (I used the word "might" go through be cause every mans experience will be somewhat different.

    Thanks to everyone who has posted and contributed to this topic.

    • carolyn96211
      carolyn96211 ES28567

      Posted

      Hi there ES

      yes we were happy we made this choice as we were given the options and lots of reading material.. Also Our Surgeon was very pleased we came to this decision ..thank goodness my husbands gland is of normal size and doesn't have to have Turp...my only worry is having the cathater in for a week or so, as I know he'll hate it..coz when he has the biopsy on the prostate it kept on blocking and causing a lot of pain with clots... So hope it doesn't happen again..

      I will keep you guys posted .. Yes thank god we don't have to pay in the UK..and this is now funded on our NHS and I know that it's under the experimental procedure.

      Best of luck and hope you get your prostate to shrink down for HIFU.

    • Dawnay
      Dawnay carolyn96211

      Posted

      This is also directed to ES....

      Our doctor, Scionti, was also treating another guy the day he treated my husband, we talked (of course!!) and his gland was also too big, but Scionti had put him on a testosterone reduction pill for 3 months, it caused the gland to shrink in size so he would be able to get all the cancer.  Has Suarez mentioned this pill?  Seems a lot easier and cheaper than a TURP.

      I hate to say this.... but there is one patient who is left with trouble after HIFU that I know of (I read him on the internet) and his doctor was George Suarez, yes the same one, who did bring the technology to light in the USA.  He burned a hole in his rectum.  Please don't get mad at me (people usually hate the messenger)... this happened some 4 years ago.  The whole story is --- the patient had HIFU in Japan, he got home and had his PSA tested, it was lowered quite a lot, but not zero.  He expected zero, he was mad and so he called Suarez and Suarez agreed to treat him again.... but he hadn't healed from the original, and thus (I think) the hole was burned.

      Another reason the FDA was negligent in not approving HIFU earlier. 

    • ES28567
      ES28567 Dawnay

      Posted

      Hi Dawnay,

      I would never hate the messenger as all information (both positive and negative) is important. I actually sent my MRI and biopsy results to Sciconti and he called me and we discussed my situation. He was a little hesitant about the best way to treat me and wanted me to come to Sarasota so he could redo the biopsy. I think he is well qualified and I would consider using him.

      Suarez will have my records on Monday and we will have our 3rd phone consultation after he has had a chance to review. He did talk about putting me on Avodart for 3 months to reduce my prostate from 98.8cc to somewhere around in the 40cc range just so he can do an effective TURP before the HIFU procedure. He said it is more like a mini TURP which will not leave me incontinent, and will minimize the chances of RE, and ED. I don't know if this is all true or not but that is what he has said. The TURP is what worries me the most.

      So, if anyone reading this has some suggestions/comments regarding: Dr. Sciconti, Dr. Suarez, HIFU, mini-TURP, or Avodart, I am very open to hear what you have to say.

    • Dawnay
      Dawnay ES28567

      Posted

      I am so happy to hear you are talking to Dr. Scionti.  I am not surprised that he phoned you, he is quite the caring doctor, a perfectionist.  Anyone of his patients could call him at any moment of the day and he is there for them.   Prior to HIFU he was a cryosurgeon, and he actually still does that (I think), which is the same process, so he has had 30 years of experience. 

      WOW, your gland is 98cc, that is huge.  I have heard about the mini turp, but never spoke to anyone who had it done.

      I wish you all the best...

       

  • Dawnay
    Dawnay carolyn96211

    Posted

    There is a brand new (small) book out written by THE John Grisham, it's called The Tumor, it is all about HIFU.  You can download it for free at Focused Ultrasound Foundation, or order it and they will send a copy of it - at their expense.  John is a neighbor of one of the doctors who is trying to get HIFU approved for all the conditions it can potentially treat, he believes this is his greatest work.   You can also get a copy at Amazon.
    • carolyn96211
      carolyn96211 Dawnay

      Posted

      Many Thanks Dawnay

      shall try later..... My husband today was seen by nurse for pre op prep..so George is now reading all about the catheter seranio he is not looking forward to that, also he has to drink this dreadful stuff 24 hours before HIFU procedure , so I'm not looking forward to that either.

      however it is a means to an end... Shall post later more detail about his core levels and Gleason 3+3 level..

      as this seems to be a discussion going on amongst a few of you on this forum,, I find it very informative, only wish I had found this forum months ago!!!. But I do think we have made the right choice..

      keep posted

      regards carolyn

    • ES28567
      ES28567 Dawnay

      Posted

      Thank you Dawnay for that information. You are awesom!
    • Dawnay
      Dawnay ES28567

      Posted

      My pleasure, I should thank this site... I found you guys because I have HIFU on google alert, this is the first time a forum has come in on an alert, usually it's news.

      I am certain Carolyn that you have made the right choice.... as John Grisham's book says this will revolutionize medicine... this is the future.

      We are wondering what he has to drink????   All my husband had to do (which he grumbled about)  the day prior was not eat, except jello, broth soup, cranberry juice, apple juice.  And he had to use Fleet enemas the morning of treatment.  We now remember that he was told afterwards NOT to 'put anything up there for 6 months'.  So, no colonoscopathy, no enema, and no repeat HIFU.

      Gosh, ES, sounds like you live down near Orlando.... sure is depressing news. 

    • carolyn96211
      carolyn96211 Dawnay

      Posted

      Hello Dawnay

      quick response, as don't know the time difference as we are in the UK time at moment 7.50pm..where are you from?.. Yes well much like you only fluids 24 hrs before soup water tea coffee no Milk etc.. The stuff he has  to drink is called Moviprep probably the same equivalent..  Like I said shall post more info abt my husbands cores of cancer etc later as feel a bit drained at moment with all this pre op stuff as a lot to think about.

      just want this out of the way.. But looking forward to our weekend with good friends who we cruise around the Caribbean with. CELEBRITY CRUISE LINE..just hope we get away this Xmas And New Year as this is all booked..And it was New Years a Day on board ship in the Caribbean that George first had symptoms of prostate problems blood in urine😁So all year not good, coz not only prostate Cancer George ct and MRI scan picked up a PE in lower lung due to Long haul flight to Miami, so this has delayed op coz he had to go on Antigoagulant for a minimum of 3 months so now he has been cleared for procedure so all a bit of a nightmare really even though he is well as he had no symptoms of a Blood Clott in his lung😳. So roll on 27th June..

      shall keep all you guys and Wife's posted.

      am tired now and I think I deserve a nice glass of wine.😊

    • Dawnay
      Dawnay carolyn96211

      Posted

      oooops... not 6 months with 'nothing up there'.... 3 months.

      Anyway,

       gosh Carolyn, you've had your share of troubles with ole George!  I googled around and found that blood clot in lungs and blood in pee could all be caused by a tumor in the prostate, so I wonder if that's what your doctor is finding.  I certainly don't need the biopsy findings - they are hard to rewrite.

      That drink is to clean him out, Scionti uses Fleet enema.

      I'm located in the middle of the USA.  About 8 hours earlier than you, so it's real late now  - you should be passed out by now (:

       

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