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HIFU EXPERIENCE

Posted , 17 users are following.

ES28567
ES28567

I have decided to have the HIFU procedure and will document my experience for anyone that in the future who is considering this procedure. My PSA has been 18.8, 18.5 and 17.8 in the last 10 months. MRI showed 4 areas of concern. 22 core Biopsy only came up with one core with 5% and Gleason score of 3+3=6. However, the urologist (who is doing the HIFU procedure) thinks (because of the high PSA score) that the urologist who did the biopsy missed the targeted area and believes the Gleason score is really higher. The only way to know is to do another biopsy which there is not much point as we already know there is cancer. The other 3 areas of concern are considered pre-cancerous. I also had a bone scan and there is no sign of metastasis. So...after what seems like endless hour/weeks/months of research, I knew I did not want a prostatectomy or radiation treatment (if at all possible) and settled on the HIFU procedure. My procedure is scheduled in 2 days and my post here is to document my experience. If anyone has questions along the way, let me know and I will respond. If others who have had the HIFU procedure want to chime in, (especially if your experience is different than mine) you are more than welcome to post.

0 likes, 125 replies

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  • harveybronx
    harveybronx ES28567

    Posted

    So, Eric (ES) should probably re-post his last post, beginning with "Hey Geoff...." and see if it sticks.  I hope he saved a copy.

    Harvey

    • geoff90305
      geoff90305 harveybronx

      Posted

      hahaha...No worries harvey, main thing is he seems to be getting over his procedure and his plumbing recovering.

      Geoff

    • ES28567
      ES28567 geoff90305

      Posted

      Hi guys!

      I didn't know my last post went missing. (Sad face)

      I didn't copy it before I sent it and so will repost with update details later. I have 2 jobs, family...so time is scarce. For now I will just say everything is progressing very well. I can honestly say... It's almost like it never even happened. Yep, its that good.

      More details later.

    • ES28567
      ES28567 harveybronx

      Posted

      Thanks Harvey,

      So here it is (I added a couple of sentences and corrected a typo but the rest is unchanged.

      Hey Geoff,

      I have been off the straw (catheter) for two weeks now. Everything is working as it should. I try not to eat too much spicy food and even though I am exercising and doing some heavier work around the house, I am careful not to strain. There is no longer any blood in my urine. I think the last of that was this last Thursday. Sometimes my stream is stronger than others but never a concern that I might be going into retention. Sometimes the flow is the best its been in a year or so and sometimes it's not only a decent stream, the volume is surprisingly a lot more than I expected based on how full I feel my bladder is before I start. There's no real consistency other than I don't worry about being able to go. I usually sleep through the night. FYI, I was only getting up once a night prior to the procedure. Now it is rare for me to get up during the night and I am not restricting my fluid intake before bedtime.

      So at this point (five and a half weeks post procedure)...I can honesty say it's almost like it never even happened,

      So, next stop is PSA test at 3 mos. post procedure. Then MRI sometime after that.

      Thanks for asking.

    • geoff90305
      geoff90305 ES28567

      Posted

      Great news ES. It would seem at this time, the procedure worked great for you. I guess the test will be when you get your PSA redone and see what the marker has been reduced to, hopefully, very low, as you still have some prostate tissue producing PSA.

      Geoff

  • ES28567
    ES28567

    Posted

    Hello all,

    I don't know how many are still following this post but I wanted to give a brief update and hopefully we can get an update from George and paperless on how they are doing with their HIFU experience.

    So I am coming up on 6 months since my HIFU procedure. Everything works as advertised with no negative side effects. I do occasionally from time to time experience some pain in the pelvic area. I did have a bit of a scare when I went in for my first PSA test since my procedure. It came back at 35! (My original PSA prior to the HIFU procedure was 18.5). So I'm wondering to myself...did we kill the cancer or just make it mad!

    I fired off an email to Dr. Scionti. His reply says he thinks it is a faulty result and wants me to retest in 2 weeks. Well, this alarming PSA score comes just a week before Christmas and no way am I telling family what's going on and chance ruining Christmas for everyone. My wife inquires if I got my PSA score back. I tell her yes and that it is higher than my first PSA (I didn't tell her it was almost double!) and that they want me to retest in 2 weeks.

    Well, the second test is not great but at least it's better and in the right direction at 16.1. Dr. Scionti wants me to do another MRI (which is std. procedure) and possibly a biopsy if their are any areas of concern. I'm thinking of just doing another PSA test and if the number stays the same or continues to go down to just do active surveillance. I think I will do another PSA test in 30 days and then decide.

    Also, how is everyone else doing that's posted here.

    • geoff90305
      geoff90305 ES28567

      Posted

      Hi ES, great you have returned and supplied more information. Yeah, I can imagine your feelings with a PSA 35..Agree, your prostate is saying, "I am #$%^ annoyed"..The second PSA is encouraging as while you have hopefully removed the PCa and its PSA production, what remains of the prostate is still putting out PSA, and maybe more due to inflammation.

      I presume you had the focal HIFU, rather than the Total gland HIFU, which means there is a possibility some of the PCa is lurking somewhere in the prostate. Great you are having a MRI again, as this can be compared to the original. I understand, repeat biopsies and focal HIFU is not uncommon when PSA is rising again or not fallen sufficiently. 

      Look forward to what you find.

      ?Geoff

    • bruce45599
      bruce45599 ES28567

      Posted

      Im going to have my procedure done with Scionti. Have a good feeling about the facilities and the people in them. Do you have any tips before i go under the knife? Thanks

    • ES28567
      ES28567 bruce45599

      Posted

      Hi Bruce. i didn't know this post was still available. If I can ask, When are you scheduled and more importantly, what are your symptoms? My best advice (without knowing more about your situation) is to go back to the very first page and read ALL my posts in this thread about my journey from start to finish. hopefully there will be some things i went through that you can avoid or at least be prepared for.

  • carolyn96211
    carolyn96211 ES28567

    Posted

    Hello ES

    George all ok he had first  psa in September  3mths after HIFU 0.36 was his result he has another psa at the end of this month Feb then another at the end of June that will be 1 Year after HIFU....he never had enlarged prostate and his psa was a low reading of abt 1.1 or 1.8. I cannot remember at the very beginning of this pc..he was always well only symptom was blood in pee..anyway that's history now...so I assume they will give him MRI in June...but at moment George has just had a hemoroidectomy Ahhhh much worse than hifu blood and cathaters..so not feeling to good at moment just hope psa test at the end of month won't be affected by his procedure, so apart from this latest episode he is ok..he says he just wants to forget about PC and move on .

    but I suppose when the psa comes we're crossing fingers..

    i wish you luck with with your journey...but I will post after Feb.

    Regards Carolyn

    PS. George has a slight problem with ED at the moment so has been given some viagra to help things along the way..so hoping for improvement after he has recovered from his Hemoroidectomy 🙂.

    But at least in the Big picture thats not life threatening..

     

    • ES28567
      ES28567 carolyn96211

      Posted

      Hi Carolyn,

      Glad to hear George is doing well in regards to his HIFU procedure and I wish him a speedy recovery with his hemororidectory. I'm sure he will be fine in the end...lol...sorry I couldn't help myself. Ok, seriously now, Would you mind telling me, was his whole prostate treated with HIFU or just the specific areas with cancer?

      I find it amazing he had such a low PSA score and yet had cancer. I know it happens but wow! Had he not had blood in the urine, his cancer probably would not have been discovered until it had advanced and was too late. I think he is very lucky.

      Best regards.

    • carolyn96211
      carolyn96211 ES28567

      Posted

      Good morning ES

      no only the specific area with HIFU left hand side coz 1 core was 7m and a very small core upper left of prostate...abt 40% was abilated...he was told initially he could do active surveillance but surgeon said 7m has to be treated.

      The prodecure aggravated his hemoroids so they became prolapsed so aggro that he didn't need..in hind sight he should of had them sorted a few years ago...but that's men😬for you....

      But I'm very confident that's psa bloods will be good...he knows that MRI's are standard protcal and maybe further biopsys, we will just have to see..but I'm not going to think about that role get now..

      Just wish you luck..and keep well.

      Regards Carolyn.

      Ps. Yes I keep telling him he's a lucky guy..coz this time last year if I hadn't gone on and on go see Dr. he would be in trouble now or in the future..

  • ES28567
    ES28567

    Posted

    Hello,

    Here is an update.

    It has been almost a year now sense my HIFU procedure. I have had PSA test which are still high (16.2). However, my last MRI test show that the HIFU did the job of destroying the cancer. (That doesn't mean it couldn't come back sometime but for now, things look pretty good. Also, the HIFU procedure took care of my BPH so I am able to pee normally and I don't have continents issues, urgency issues, or the need to get up in the middle of the

    Night. So all on all, life is probably what I would call normal for my age of 58. I would say at this point, I am very happy with my decision to select HIFU for my procedure to destroy the cancer with the bonus of alleviating my BPH at the same time. Let me know if any of you have any questions. So...here is my new motto :

    Long live the prostate!

    • geoff90305
      geoff90305 ES28567

      Posted

      Hi ES,

      Great that your symptoms, other than the PSA seem to be pretty normal now and life can continue. 

      If you would have had your prostate removed, I am sure your outlook on life may be a little different.

      Did you ever have a PSA history to see what is normal for you? Maybe, your PSA has always been "high".

      Here in Brisbane a few days ago, the Cancer Research Centre have just created a targeted immunotherapy for prostate cancer, which they say has had astounding results and will be open for Australia wide trialing in a few months’ time.

      Sooner or later someone is going to sort out this mens cancer…

      Remember when Aids was a death sentence...now, just an annoyance.

      Regards

      Geoff

    • ES28567
      ES28567 geoff90305

      Posted

      Hi Geoff,

      Thanks for your kind reply. It great to hear about the progress they are making in immunotherapy.

      To answer your question, I did not have a PSA the street so there is no benchmark to go from. So far, I am very happy with the choice that I made. Of course, the real proof will be down the road but for now I'm very happy with the results.

      Long live the prostate!

    • ES28567
      ES28567

      Posted

      *I did not have a PSA test history so there is no benchmark to go from.
    • ES28567
      ES28567

      Posted

      If anyone is still monitoring this post, it would be great to get an update on how everyone is doing.
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