HIFU

stanga
stanga Member Posts: 1
edited March 2014 in Prostate Cancer #1
I am not eligible for surgery for prostate cancer because of a heart condition. I am investigating HIFU in Canada, though my urologist recommends against it.

Has anyone had any experience with this procedure? and, if so, do you recommend it?

jes

Comments

  • stuart
    stuart Member Posts: 88
    This is not to my knowledge approved in the US...I have never heard of ultrasound used to kill prostate cancer cells...I went on the web to check it out but the only information I could find came from the company that makes the equipment...I would try to find actual independent studies before going with this...
  • Benji48
    Benji48 Member Posts: 117
    Hi,
    Here's a rather extensive article on the process.
    http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html
    As noted the process is only in clinical trials whithin the US & survival data is only 5yrs down the road.
    Good Luck, Ben
  • amarleaux2
    amarleaux2 Member Posts: 17
    I went to a prostate cancer seminar at City of Hope last week and the doctors there stated that there is no evidence that HIFU has any curative data and they believe it not to be benficial at all. I also went to another cancer website at www.cancercompass.com and saw a totally dissatisfied patient who was left totally incontinent and no follow-up or support. At this point Ultrasound is great as a diagnostic tool, but a cure for cancer? No proof as of now!
  • trudi2
    trudi2 Member Posts: 1
    If you want more information on the subject, try european sites. HIFU is also offered in England. If you understand french, italian or spanish, or any other foreign language then try finding something there. You won´t have much luck finding something in the USA.

    My husband had a HIFU therapy last September. His quality of life is quite good in comparison to the side-effects of other therapies.
    Going to Canada might be a good idea for you, depending upon where you live. Since we live in Europe, my husband was treated there, so we can´t tell you what to recommend in America.

    Good luck for whatever therapy you choose.
    trudi2
  • aml1248-
    aml1248- Member Posts: 2
    stuart said:

    This is not to my knowledge approved in the US...I have never heard of ultrasound used to kill prostate cancer cells...I went on the web to check it out but the only information I could find came from the company that makes the equipment...I would try to find actual independent studies before going with this...

    I know there is info on HIFU at www.internationalhifu.com
  • Washburn4
    Washburn4 Member Posts: 5
    HIFU Treatment

    I just had the HIFU treatment in Bermuda the day before yesterday, by Dr. Stephen Scionti.  You might want to check out his web site.  He is on the medical faculty at NYU, is involved in the clinical trials to get FDA approval for HIFU, and has done over 1,000 such treatments.

    Everything about the treatment was superb, I am home intact, and am looking forward to many more years of normal life (I'm 72).

    Dr. Scionti's stats are about 1-2% chance of incontinence and 10% for impotence.  Compare that to surgery and radiation.

    And yes, Dr. Scionti is connected with HIFU International but I'm not sure what difference that makes.  He uses the Sonoblate 500 machine with some other imaging machines.  I know the Canadians use the Ablathern and there seem to be pluses and minuses to each.

    A couple things to remember.  A urologist is a surgeon.  Urologists don't want to talk about HIFU as it represents a different method of treatment.

    To say HIFU is experimental is only to say that it is still experimental in the States.  Practioners like Scionti do it routinely, have great results, and don't consider there to be anything experimental about.  In a year or two it will likely be approved by the FDA so then there will be nothing "experimental" about it.

    Anyway, I am greatly pleased with the result so far and welcome questions.  I'm just grateful to have this behind me.  Another fellow who had it done this weekend was joking that he thought maybe he had paid for nothing as he didn't feel any differently after the procedure.  Just the catheter bag, which will be gone in couple weeks (you have to flush out the dead material from the HIFU). 

     

  • Kongo
    Kongo Member Posts: 1,166 Member
    Washburn4 said:

    HIFU Treatment

    I just had the HIFU treatment in Bermuda the day before yesterday, by Dr. Stephen Scionti.  You might want to check out his web site.  He is on the medical faculty at NYU, is involved in the clinical trials to get FDA approval for HIFU, and has done over 1,000 such treatments.

    Everything about the treatment was superb, I am home intact, and am looking forward to many more years of normal life (I'm 72).

    Dr. Scionti's stats are about 1-2% chance of incontinence and 10% for impotence.  Compare that to surgery and radiation.

    And yes, Dr. Scionti is connected with HIFU International but I'm not sure what difference that makes.  He uses the Sonoblate 500 machine with some other imaging machines.  I know the Canadians use the Ablathern and there seem to be pluses and minuses to each.

    A couple things to remember.  A urologist is a surgeon.  Urologists don't want to talk about HIFU as it represents a different method of treatment.

    To say HIFU is experimental is only to say that it is still experimental in the States.  Practioners like Scionti do it routinely, have great results, and don't consider there to be anything experimental about.  In a year or two it will likely be approved by the FDA so then there will be nothing "experimental" about it.

    Anyway, I am greatly pleased with the result so far and welcome questions.  I'm just grateful to have this behind me.  Another fellow who had it done this weekend was joking that he thought maybe he had paid for nothing as he didn't feel any differently after the procedure.  Just the catheter bag, which will be gone in couple weeks (you have to flush out the dead material from the HIFU). 

     

    Wish you well but ...

    I hope you continue to recover from your procedure and find satisfaction with your choice of treatment but I disagree with your thoughts that this procedure is likely to receive FDA approval anytime soon.  There are a number of problems with HIFU, not the least of which is a relatively poor success rate and high impotence occurance following treatment.  A recent German 8-year study showed disappointing results in long term recurrence free results and only about 25% of the men in the study who were potent before treatment regained potency after treatment.

    You can read more about this study here:  http://prostatecancerinfolink.net/2013/03/04/hifu-outcomes-in-germany-after-an-average-of-8-years-of-follow-up/

    It would be informative if you could post the background of your diagnosis to put your treatment choice in context.  For example, what was your PSA history, biopsy results, DRE results, staging, and so forth?  What other consultants did you discuss potential treatment options with?  What was it that led you to decide to travel overseas and pay for a treatment out of your own pocket that is not approved in the United States?

    One reason urologists may be reluctant to talk about HIFU is that it is not approved in the US, many studies do not show high success rates, and self-paying for this procedure is beyond the means of many, if not most, patients in the age group where prostate cancer tends to strike.

    While I appreciate your enthusiastic endorsement of your doctor, Dr. Scionti has a significant potential conflict of interest with this treatment, particularly his financial arrangement with HIFU international and proceeds from marketing the Sonablate 500.  While none of that may have any bearing at all on the effectiveness of treatment, it would cause me personally to pause.

    Again, I wish you success in your treatment and hope you fill us in with more details.

     

    K

     

  • Washburn4
    Washburn4 Member Posts: 5
    Kongo said:

    Wish you well but ...

    I hope you continue to recover from your procedure and find satisfaction with your choice of treatment but I disagree with your thoughts that this procedure is likely to receive FDA approval anytime soon.  There are a number of problems with HIFU, not the least of which is a relatively poor success rate and high impotence occurance following treatment.  A recent German 8-year study showed disappointing results in long term recurrence free results and only about 25% of the men in the study who were potent before treatment regained potency after treatment.

    You can read more about this study here:  http://prostatecancerinfolink.net/2013/03/04/hifu-outcomes-in-germany-after-an-average-of-8-years-of-follow-up/

    It would be informative if you could post the background of your diagnosis to put your treatment choice in context.  For example, what was your PSA history, biopsy results, DRE results, staging, and so forth?  What other consultants did you discuss potential treatment options with?  What was it that led you to decide to travel overseas and pay for a treatment out of your own pocket that is not approved in the United States?

    One reason urologists may be reluctant to talk about HIFU is that it is not approved in the US, many studies do not show high success rates, and self-paying for this procedure is beyond the means of many, if not most, patients in the age group where prostate cancer tends to strike.

    While I appreciate your enthusiastic endorsement of your doctor, Dr. Scionti has a significant potential conflict of interest with this treatment, particularly his financial arrangement with HIFU international and proceeds from marketing the Sonablate 500.  While none of that may have any bearing at all on the effectiveness of treatment, it would cause me personally to pause.

    Again, I wish you success in your treatment and hope you fill us in with more details.

     

    K

     

    For starters, I am not a doctor, company rep., academic or expert in this field in any way - just a person who had the HIFU treatment after two years of active surveillance and actively researching the subject the whole time.  My conclusion was, after looking at all the options and talking to many men who had various kinds of treatment that, when it was time to have a treatment, which I accepted as probably inevitable, I wanted HIFU.

    As for my history:

    - I was diagnosed in November, 2010 as a result of a routine physical.  The blood work showed a PSA of 4.1 so my primary doctor referred me to a urologist for a biopsy.  I recall it was 13 samples and 5? showed Gleason 6 cancer.  I believe my prostate was 39 cc at the time and the cancer was considered to be Stage II as it was on both sides of the prostate.

    - My urologist at the time encouraged treatment but granted that active surveillance could be appropriate.  My primary doctor and my son-in-law's father, a radiation oncologist in New York, agreed.

    - So I did active surveillance until last November.  My wife and i also went on a mostly vegan diet, inspired by the work of Dr. Colin Campbell or Cornell and Dr. Mark Scholz of the Prostate Cancer Research Institute in California.  At that point I changed urologists.  My first one seemed to specialize in circumcisions, and I had already had that.  The one I chose is a highly regarded surgeon in Minneapolis who also offers HIFU.

    -The new urologist did a biopsy which showed that the cancer had progressed in volume and severity; one sample in the apex was now a Gleason 7.  We all agreed that it was probably time for treatment.  My PSA was 4.1 (in two years the high was 4.6 and the low 3.15) and my prostate had decreased in size to 31.  My primary doctor thought our diet may have played a role in that.

    - My urologist ran through all my options with what I felt was a slight push toward robotic surgery, but he also said I would be a good candidate for HIFI.

    - I was the one who mentioned Dr. Scionti to my urologist as I had been impressed with his web site, credentials, videos, etc.

    - It turned out my urologist had worked with/trained with Dr. Scionti but had personally only done 20 treatments.  Oops.  But he also said he would have no problem if I wanted to contact Scionti myself, which I did, and the rest is history.

    With regard to your other points:

    - I have no idea when HIFU will be approved and neither, it seems, does anyone else.  

    - I've read the German study, or at least the article you cited.  The article mentions some of the same problems I had with its conclusions.  Namely, that it does cover eight years and the techniques and technology of HIFU have change greatly over that period of time.  People who had radiation eight years ago suffered side effects that are almost unknown now.  And every other technique has progressed as well.  I decided to focus on the stats of the person I was asking to do my procedure.

    - The fact that HIFU isn't approved in the US became unimportant to me given that it is common practice now in most of the rest of the civilized world, although not necessarily covered by insurance (Canada being one).

    I know Dr. Scionti is part of HIFU International, just like my urologiste here is part of his practice.  I don't know about what financial arrangements he may have with regard to the Sonablate 500.  And I guess I have to say I don't really care.  I accept that many doctors have investments in technology in various ways.  I also know that Mayo, right down the road from me, is currently spending hundreds of millions of dollars to build proton beam radiation machines.  Does that mean it will be inappropriate for one of their doctors to suggest to a patient they they have proton beam treatment?

    - We are not wealthy and I was less than delighted to have to pay out of pocket.  However, I am currently 72 years old and my family genes would suggest that I might be around for at least another 20 years.  So I consider it money well spent, assuming the promise of the treatment is realized.

    I had the treatment four days ago and today I started peeing "normally" ( about 20% out normal channels and the residual out the tube) and I ran errands this afternoon without a bag.  So far I am beyond happy at the results.  Ask me about the impotence piece later.  So far I no reason to believe that won't work too.

    I think that covers it.  Questions are welcome.

  • robpue
    robpue Member Posts: 3
    Washburn4 said:

    For starters, I am not a doctor, company rep., academic or expert in this field in any way - just a person who had the HIFU treatment after two years of active surveillance and actively researching the subject the whole time.  My conclusion was, after looking at all the options and talking to many men who had various kinds of treatment that, when it was time to have a treatment, which I accepted as probably inevitable, I wanted HIFU.

    As for my history:

    - I was diagnosed in November, 2010 as a result of a routine physical.  The blood work showed a PSA of 4.1 so my primary doctor referred me to a urologist for a biopsy.  I recall it was 13 samples and 5? showed Gleason 6 cancer.  I believe my prostate was 39 cc at the time and the cancer was considered to be Stage II as it was on both sides of the prostate.

    - My urologist at the time encouraged treatment but granted that active surveillance could be appropriate.  My primary doctor and my son-in-law's father, a radiation oncologist in New York, agreed.

    - So I did active surveillance until last November.  My wife and i also went on a mostly vegan diet, inspired by the work of Dr. Colin Campbell or Cornell and Dr. Mark Scholz of the Prostate Cancer Research Institute in California.  At that point I changed urologists.  My first one seemed to specialize in circumcisions, and I had already had that.  The one I chose is a highly regarded surgeon in Minneapolis who also offers HIFU.

    -The new urologist did a biopsy which showed that the cancer had progressed in volume and severity; one sample in the apex was now a Gleason 7.  We all agreed that it was probably time for treatment.  My PSA was 4.1 (in two years the high was 4.6 and the low 3.15) and my prostate had decreased in size to 31.  My primary doctor thought our diet may have played a role in that.

    - My urologist ran through all my options with what I felt was a slight push toward robotic surgery, but he also said I would be a good candidate for HIFI.

    - I was the one who mentioned Dr. Scionti to my urologist as I had been impressed with his web site, credentials, videos, etc.

    - It turned out my urologist had worked with/trained with Dr. Scionti but had personally only done 20 treatments.  Oops.  But he also said he would have no problem if I wanted to contact Scionti myself, which I did, and the rest is history.

    With regard to your other points:

    - I have no idea when HIFU will be approved and neither, it seems, does anyone else.  

    - I've read the German study, or at least the article you cited.  The article mentions some of the same problems I had with its conclusions.  Namely, that it does cover eight years and the techniques and technology of HIFU have change greatly over that period of time.  People who had radiation eight years ago suffered side effects that are almost unknown now.  And every other technique has progressed as well.  I decided to focus on the stats of the person I was asking to do my procedure.

    - The fact that HIFU isn't approved in the US became unimportant to me given that it is common practice now in most of the rest of the civilized world, although not necessarily covered by insurance (Canada being one).

    I know Dr. Scionti is part of HIFU International, just like my urologiste here is part of his practice.  I don't know about what financial arrangements he may have with regard to the Sonablate 500.  And I guess I have to say I don't really care.  I accept that many doctors have investments in technology in various ways.  I also know that Mayo, right down the road from me, is currently spending hundreds of millions of dollars to build proton beam radiation machines.  Does that mean it will be inappropriate for one of their doctors to suggest to a patient they they have proton beam treatment?

    - We are not wealthy and I was less than delighted to have to pay out of pocket.  However, I am currently 72 years old and my family genes would suggest that I might be around for at least another 20 years.  So I consider it money well spent, assuming the promise of the treatment is realized.

    I had the treatment four days ago and today I started peeing "normally" ( about 20% out normal channels and the residual out the tube) and I ran errands this afternoon without a bag.  So far I am beyond happy at the results.  Ask me about the impotence piece later.  So far I no reason to believe that won't work too.

    I think that covers it.  Questions are welcome.

    Update

    Hi Washburn4, I'm considering to have HIFU procedure for me in about 4 weeks and would like to ask you how is your HIFU results 3 years after your procedure was done. I understrand that was already approved by FDA on october 2015 and I have been trying to determine what the best procedure is for me.

    my PSA is 8 and Gleason 6 with 5 malignous cores out of 9

    Thanks for your info.

    Robpue 

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    robpue said:

    Update

    Hi Washburn4, I'm considering to have HIFU procedure for me in about 4 weeks and would like to ask you how is your HIFU results 3 years after your procedure was done. I understrand that was already approved by FDA on october 2015 and I have been trying to determine what the best procedure is for me.

    my PSA is 8 and Gleason 6 with 5 malignous cores out of 9

    Thanks for your info.

    Robpue 

    Deleted post

    Deleted my post because I saw that you started a new thread on the same topic.  Better there than here.