So what about HIFU????

Evagirl
Evagirl Member Posts: 60
edited March 2014 in Prostate Cancer #1
I see alot of people on here mentioning HIFU...and saw one tread where someone was talking about it being the next thing to a total cure...and yet someone else telling
them to stop pedaling their unapproved cure...???

I am perplexed....

Please someone tell me what it is and if it is a good or not so good treatment??


thanks~~
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Comments

  • erisian
    erisian Member Posts: 107
    HIFU
    That's a sore subject with some around here...
    What it is is High Intensity Focused Ultrasound. It creates heat in a small space around the focal point. It should be a good treatment for localized tumors of any kind. Because of the focus, it should do minimal damage to surrounding tissue, and unlike any form of radiation, it isn't inherently carcinogenic. And unlike surgery, it is noninvasive. The trouble is, it hasn't yet received FDA approval, so it is only currently available outside the US. So it can be said that they don't have any studies proving that it is effective. That means no _US_ studies have been done, and no approval means no insurance coverage.
  • Hoosierdaddy
    Hoosierdaddy Member Posts: 16
    HIFU
    Dr. Michael Koch at Indiana University Med Center told me he led a clinical trial on HIFU, and halted it before completion. You may wish to contact him for information. He did my DaVinci surgery in Dec. 09. As good as HIFU sounds, I decided it was not for me. It's done out of the country only at a cost of $25,000, not covered by insurance.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    HIFU Info
    I just started looking into HIFU.

    Not sure why people regard it as SO controversial. Yeah, it's not FDA approved but the US is often the last to adopt new technologies and we're not talking about quackery -- the technology is similar to IMRT but uses ultrasound instead of photon radiation. You can get HIFU in Europe, Asia, Canada, Mexico, Argentina, India and the Carribean. Ancedotal reports by patients who've received it are positive -- but not universally so.

    So, it's not a perfect "cure" and the quality of treatment depends on the skill & experience of the person (or people) implementing it (which is pretty limited to date. One HIFU mfg (Sonablate) claims 20-30% ED risk and only 0-2%incontinence risk but you have to wear a catheter for 1-4 wks following treatment and still have risk of strictures and rectal bleeding with 94% disease free survival after 4 years and an 87% negative biopsy rate after 6 months, which isn't all that impressive to me.

    See: http://www.internationalhifu.com/prostate-cancer-treatments-hfiuforprostate-65.html.

    You can also find an extensive discussion of HIFC -- the good and the bad -- in this thread on the Prostate Cancer Forum: http://www.cancerforums.net/about13991.html.
  • the.wife
    the.wife Member Posts: 20

    HIFU Info
    I just started looking into HIFU.

    Not sure why people regard it as SO controversial. Yeah, it's not FDA approved but the US is often the last to adopt new technologies and we're not talking about quackery -- the technology is similar to IMRT but uses ultrasound instead of photon radiation. You can get HIFU in Europe, Asia, Canada, Mexico, Argentina, India and the Carribean. Ancedotal reports by patients who've received it are positive -- but not universally so.

    So, it's not a perfect "cure" and the quality of treatment depends on the skill & experience of the person (or people) implementing it (which is pretty limited to date. One HIFU mfg (Sonablate) claims 20-30% ED risk and only 0-2%incontinence risk but you have to wear a catheter for 1-4 wks following treatment and still have risk of strictures and rectal bleeding with 94% disease free survival after 4 years and an 87% negative biopsy rate after 6 months, which isn't all that impressive to me.

    See: http://www.internationalhifu.com/prostate-cancer-treatments-hfiuforprostate-65.html.

    You can also find an extensive discussion of HIFC -- the good and the bad -- in this thread on the Prostate Cancer Forum: http://www.cancerforums.net/about13991.html.

    Swing shift,
    I found the

    Swing shift,

    I found the odds of 94% disease free survival quite impressive! Yes, it may be higher with surgery, but the odds of him being incontinent and ED are really high with surgery and I can't bare the thought of that, our doctor made incontinence sound like not a big deal, which really ticked me off, so I just booked HIFU in Mexico and can't wait.

    Seems to me the "sore subject" of HIFU is because some people can't afford it, I decided that I can't afford not to take the HIFU road, I'll let you all know what happens. Let's all pray it gets approved soon, so our options are more honest.
  • Trew
    Trew Member Posts: 931 Member
    the.wife said:

    Swing shift,
    I found the

    Swing shift,

    I found the odds of 94% disease free survival quite impressive! Yes, it may be higher with surgery, but the odds of him being incontinent and ED are really high with surgery and I can't bare the thought of that, our doctor made incontinence sound like not a big deal, which really ticked me off, so I just booked HIFU in Mexico and can't wait.

    Seems to me the "sore subject" of HIFU is because some people can't afford it, I decided that I can't afford not to take the HIFU road, I'll let you all know what happens. Let's all pray it gets approved soon, so our options are more honest.

    Less controverisal and
    Less controverisal and highly effective is proton therapy. And you avoid the risks associated with surgery.

    New proton centers are being built in a number of areas- expensive, inconvienent for sure since you have to be away from home for most people, but excellent treatment and outcomes.
  • Evagirl
    Evagirl Member Posts: 60
    Trew said:

    Less controverisal and
    Less controverisal and highly effective is proton therapy. And you avoid the risks associated with surgery.

    New proton centers are being built in a number of areas- expensive, inconvienent for sure since you have to be away from home for most people, but excellent treatment and outcomes.

    what about the risk of............

    the Proton therapy does sound good...the only discouraging thing I read was
    a possible increased risk of bladder cancer after the Proton treatment

    I didnt understand why this would be a risk???
  • Trew
    Trew Member Posts: 931 Member
    Evagirl said:

    what about the risk of............

    the Proton therapy does sound good...the only discouraging thing I read was
    a possible increased risk of bladder cancer after the Proton treatment

    I didnt understand why this would be a risk???

    Bladder Cancer after Proton?
    I have not heard about this in the comments by men who keep sharing about their proton days years after. I understand I could get bladder cancer, but my PCa went into the bladderneck and maybe touched the bladder itself. If I do get bladder cancer it would hardly be the fault of the proton therapy I had.

    Radiaiton is toughon the body, too, but you do what you have to do. I just know- after the fact, quality of life is a very important issue to consider with any treatment decisions.

    Personally, I think the stage of deciding what to do is as difficult as the treatment itself. Whatever you do, it has consequences. PC is just nasty but the vast majority of men have pretty good quality of life after proton therapy.

    Did you read Robert Mackini's book on prostate cancer and his treatment at LLU? I think he may even take phone calls. I know it has been some years now since his proton therapy was completed and he is still a happy man and firing real bullets and not blanks.
  • luckyman2
    luckyman2 Member Posts: 54
    the.wife said:

    Swing shift,
    I found the

    Swing shift,

    I found the odds of 94% disease free survival quite impressive! Yes, it may be higher with surgery, but the odds of him being incontinent and ED are really high with surgery and I can't bare the thought of that, our doctor made incontinence sound like not a big deal, which really ticked me off, so I just booked HIFU in Mexico and can't wait.

    Seems to me the "sore subject" of HIFU is because some people can't afford it, I decided that I can't afford not to take the HIFU road, I'll let you all know what happens. Let's all pray it gets approved soon, so our options are more honest.

    HIFU in Canada
    I live in Canada where HIFU has been available for years.

    I could certainly afford the $27,000 price tag, but decided against it because: 1. the jury is still out on the long-term effectiveness of this procedure. 2. the location of the cancer in my prostate made it very likely that I would have serious ED problems as a result of the treatment. I opted for surgery. The pathology report and my recovery both proved that I made the right decision for my particular case.

    It was only a "sore subject" because of one particular individual who really pushed HIFU so much in different threads (conversations) and in some completely unrelated topics, that it appeared this person was getting a "finder's fee" from the HIFU clinic in Mexico. That's unfortunate, because it hurt the credibility of this treatment option.
  • the.wife
    the.wife Member Posts: 20
    luckyman2 said:

    HIFU in Canada
    I live in Canada where HIFU has been available for years.

    I could certainly afford the $27,000 price tag, but decided against it because: 1. the jury is still out on the long-term effectiveness of this procedure. 2. the location of the cancer in my prostate made it very likely that I would have serious ED problems as a result of the treatment. I opted for surgery. The pathology report and my recovery both proved that I made the right decision for my particular case.

    It was only a "sore subject" because of one particular individual who really pushed HIFU so much in different threads (conversations) and in some completely unrelated topics, that it appeared this person was getting a "finder's fee" from the HIFU clinic in Mexico. That's unfortunate, because it hurt the credibility of this treatment option.

    Proton therapy didn't go
    Proton therapy didn't go through any trials either, so there's no long term success rate and it's radiation, that's why it may cause cancer later on. I'm still very happy we were accepted for hifu, I realize not everyone is accepted. International HIFU seems to me to be a very professional outfit, I don't believe they give out finders fees, how could they actually track it? You can read the credibility of hifu at cancerforums.net, like someone else posted. I'm staying positive and focused, with 30 pages of info & questions they sent us!
  • Evagirl
    Evagirl Member Posts: 60
    Trew said:

    Bladder Cancer after Proton?
    I have not heard about this in the comments by men who keep sharing about their proton days years after. I understand I could get bladder cancer, but my PCa went into the bladderneck and maybe touched the bladder itself. If I do get bladder cancer it would hardly be the fault of the proton therapy I had.

    Radiaiton is toughon the body, too, but you do what you have to do. I just know- after the fact, quality of life is a very important issue to consider with any treatment decisions.

    Personally, I think the stage of deciding what to do is as difficult as the treatment itself. Whatever you do, it has consequences. PC is just nasty but the vast majority of men have pretty good quality of life after proton therapy.

    Did you read Robert Mackini's book on prostate cancer and his treatment at LLU? I think he may even take phone calls. I know it has been some years now since his proton therapy was completed and he is still a happy man and firing real bullets and not blanks.

    Trew

    You sure have that right about the decision making...


    I feel content one day with our decison to have surgery and the next day I am second guessing myself... I dont want to look back and think " we should have done something
    different" I dont know , I am just so confused sometimes....
    and then again...DH has madeup his mind and I dont want to destroy his peace of mind..

    I will go and try to find info on Robert Mackini's book...
  • lewvino
    lewvino Member Posts: 1,010
    Evagirl said:

    Trew

    You sure have that right about the decision making...


    I feel content one day with our decison to have surgery and the next day I am second guessing myself... I dont want to look back and think " we should have done something
    different" I dont know , I am just so confused sometimes....
    and then again...DH has madeup his mind and I dont want to destroy his peace of mind..

    I will go and try to find info on Robert Mackini's book...

    You can call out to Loma
    You can call out to Loma Linda Hospital in Ca and they will send you the book for free. I did read the book and my dad was treated at Loma Linda with Proton. The book has some good information but Bob (robert) Tells a story of seeing his brother after open prostate surgery...I got the impression after reading that Bob was trying to scare people away frrom surgery. (just my thought). The robotic is far from that type of surgery. I was up walking (Short distance) The evening after my surgery.

    Larry
  • luckyman2
    luckyman2 Member Posts: 54
    the.wife said:

    Proton therapy didn't go
    Proton therapy didn't go through any trials either, so there's no long term success rate and it's radiation, that's why it may cause cancer later on. I'm still very happy we were accepted for hifu, I realize not everyone is accepted. International HIFU seems to me to be a very professional outfit, I don't believe they give out finders fees, how could they actually track it? You can read the credibility of hifu at cancerforums.net, like someone else posted. I'm staying positive and focused, with 30 pages of info & questions they sent us!

    Finder's Fee
    There's no doubt in my mind that International HIFU is a very professional outfit. In addition, HIFU looks like a very promising treatment option for some with PC... and that's a very positive step.

    I invited you to reread my entry above. I never questioned the credibility of HIFU and I did not mention "International HIFU" in connection with a "finder's fee", so please don't put words in my mouth.

    I also invite you to read the "Visit with Dr. Mike Koch" discussion on this website. It is the first entry for that particular discussion... (but please read the entire thread to put this into context)... and I quote from that first entry:

    "Also, the lead investigator there at IU that worked for the company that makes the equipment, (Suarez) was FIRED by the company and taken out of the clinical trials research and this is when he started practicing in Mexico. Dr. Koch also said that he is paying $10,000 'finders fee' to MD's here who get their patients to go to Mexico."
  • luckyman2
    luckyman2 Member Posts: 54
    the.wife said:

    Swing shift,
    I found the

    Swing shift,

    I found the odds of 94% disease free survival quite impressive! Yes, it may be higher with surgery, but the odds of him being incontinent and ED are really high with surgery and I can't bare the thought of that, our doctor made incontinence sound like not a big deal, which really ticked me off, so I just booked HIFU in Mexico and can't wait.

    Seems to me the "sore subject" of HIFU is because some people can't afford it, I decided that I can't afford not to take the HIFU road, I'll let you all know what happens. Let's all pray it gets approved soon, so our options are more honest.

    "the.wife", I'm a bit confused...
    You stated, "...which really ticked me off, so I just booked HIFU in Mexico... " and you also stated, "... I decided that I can't afford not to take the HIFU road".

    I'm a bit confused by your CSN name, "the.wife".

    Are you the wife of the man who has PC, or are you the man who has it? I've seen earlier postings by you and you have written as the wife of a man who was just diagnosed with PC.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    HIFU trial
    The other day I spoke with a surgeon , who told me that UCLA is doing a hifu trial for men with more advanced disease......this surgeon think that hifu might be good for men in that category.

    Ira
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    luckyman2 said:

    Finder's Fee
    There's no doubt in my mind that International HIFU is a very professional outfit. In addition, HIFU looks like a very promising treatment option for some with PC... and that's a very positive step.

    I invited you to reread my entry above. I never questioned the credibility of HIFU and I did not mention "International HIFU" in connection with a "finder's fee", so please don't put words in my mouth.

    I also invite you to read the "Visit with Dr. Mike Koch" discussion on this website. It is the first entry for that particular discussion... (but please read the entire thread to put this into context)... and I quote from that first entry:

    "Also, the lead investigator there at IU that worked for the company that makes the equipment, (Suarez) was FIRED by the company and taken out of the clinical trials research and this is when he started practicing in Mexico. Dr. Koch also said that he is paying $10,000 'finders fee' to MD's here who get their patients to go to Mexico."

    I'm thinking that this Dr. Koch made this
    statement which may or may not be true.

    In my change I came across a candian two dollar piece, 1996. It's kinda silver on the outside rim and tan in the middle with a pic of elisabeth the second on one side and a bear on the other side( I think that I mighta picked it up when we went to glazier park)...........kinda interesting that canada and the usa took different paths.....it seems that both choices turned out to be right.

    Ira
  • bdhilton
    bdhilton Member Posts: 802 Member
    luckyman2 said:

    "the.wife", I'm a bit confused...
    You stated, "...which really ticked me off, so I just booked HIFU in Mexico... " and you also stated, "... I decided that I can't afford not to take the HIFU road".

    I'm a bit confused by your CSN name, "the.wife".

    Are you the wife of the man who has PC, or are you the man who has it? I've seen earlier postings by you and you have written as the wife of a man who was just diagnosed with PC.

    Humm…I am confused to by
    Humm…I am confused to by these statements too... I think you are on to something "Watson"
  • the.wife
    the.wife Member Posts: 20
    bdhilton said:

    Humm…I am confused to by
    Humm…I am confused to by these statements too... I think you are on to something "Watson"

    Yes, I am the wife of a man
    Yes, I am the wife of a man who has PC. Isn’t International HIFU the only place where you can book HIFU out of the country? That’s why I thought that’s what you meant.

    I don’t believe Dr. Koch about the finders fee, I think doctors are resentful of HIFU and afraid of it’s approval. Dr. Koch could lose his license over a finders fee.

    I don’t understand your confusion over my statement that I am afraid of NOT taking the HIFU road. I think it the least likely to hurt my sweetie.

    Now, I don’t think I’ll be back, I want to stay positive, and this isn‘t a nice forum. We aren’t booked with Suarez, we are booked with Dr. S. Scionti. Thanks for the nice welcome…..
  • mrshisname
    mrshisname Member Posts: 186

    HIFU
    Dr. Michael Koch at Indiana University Med Center told me he led a clinical trial on HIFU, and halted it before completion. You may wish to contact him for information. He did my DaVinci surgery in Dec. 09. As good as HIFU sounds, I decided it was not for me. It's done out of the country only at a cost of $25,000, not covered by insurance.

    Dr. Koch
    He also mentioned that the company that manufactures the HIFU machine FIRED Dr. Suarez for unprofessional practices. MAKE SURE IF YOU DO HIFU it is NOT Dr. Suarez doing it!
  • mrshisname
    mrshisname Member Posts: 186
    the.wife said:

    Swing shift,
    I found the

    Swing shift,

    I found the odds of 94% disease free survival quite impressive! Yes, it may be higher with surgery, but the odds of him being incontinent and ED are really high with surgery and I can't bare the thought of that, our doctor made incontinence sound like not a big deal, which really ticked me off, so I just booked HIFU in Mexico and can't wait.

    Seems to me the "sore subject" of HIFU is because some people can't afford it, I decided that I can't afford not to take the HIFU road, I'll let you all know what happens. Let's all pray it gets approved soon, so our options are more honest.

    sure hope it is not with Suarez
    I wish you every best wish but hope you didn't book with this guy. Have it from Dr. Koch that he was kicked out of the clinical trials and also fired by the company that makes the HIFU machine...
  • mrshisname
    mrshisname Member Posts: 186

    HIFU trial
    The other day I spoke with a surgeon , who told me that UCLA is doing a hifu trial for men with more advanced disease......this surgeon think that hifu might be good for men in that category.

    Ira

    HIFU trial
    The HIFU trials in the US are only for those who have failed radiation tx.