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Thread: Sticky: What I Need to Know about HIFU

  1. #21
    Experienced User
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    Jul 2013
    Posts
    60
    Gary,
    I'm sorry to hear of your negative experience. It sounds as if you had a focal HIFU on the identified PCa in left lobe but without treating entire prostate, correct? I posted links above to recent studies on focal HIFU that sound encouraging but know that's no comfort to you. Have you already completed surgery? At least it sounds as if like it's still confined to your prostate, raising the odds for a complete cure.

    David
    David W

    PSA:
    1/04: 2.3
    2/09: 3.2
    3/12: 3.9
    5/13: 4.1
    5/14: 4.5
    8/15: 4.9 (10.5 years to double)
    10/15: MRI, two lesions, equivocal suspicion
    11/15: Biopsy positive, in 9/14 cores, both lobes, Gleason 3+3=6
    11/15: CT scan, PCa confined to prostate
    12/15: Researching treatment choices.
    2/16: Scheduled for HIFU on 2/26/16 with TURP laser vaporization 3 days before (to reduce size of prostate to <40 cm)
    2/16: TURP Laser vaporization peformed pre-HIFU even though prostate was <40cc. Uro recommended to minimize risk of blockage post-HIFU
    2/1: HIFU on 2/26/16
    3/16: Catheter removed 3/3/16. No incontinence issues.
    5/16: First post-HIFU PSA 0.58
    7/16: PSA 1.13 (contemporaneous with blood in urine after 30+ mi. bike ride)
    9/16 PSA 1.48
    11/16 PSA back down to 0.59 (Whew! What a relief it is!)
    12/16 PSA 1.12
    1/17 PSA 0.60
    2/17 PSA 0.47
    4/17 PSA 1.03
    7/17 PSA 0.44
    10/17 PSA 0.13
    5/18 PSA 0.24
    9/18 PSA 0.11

  2. #22
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    May 2016
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    1

    Bad Biopsy or Bad HIFU?

    Quote Originally Posted by ukusabt View Post
    Hi,

    Just thought I would share my experience for those considering, or have had, HIFU:-

    I had HIFU at in October 2013, due to a PSA of 3.6 which prompted a T3 MRI scan and a Template guided biopsy. These 'specialised' private diagnostics resulted in the discovery of a small amount of Gleason 3+3 PCa in the left side, which the HIFU supposedly removed.

    I've had PSA tests every 3 months since, none of which ever went below 2. In February this year, my PSA jumped to 4.86 from the 2.6 it was three months earlier. I was then recommended to have a 'Focal Template Biopsy' which revealed that half of my remaining prostate is now infected with Gleason 4+4 PCa!!! Being a self pay patient, I was told to transfer back to the NHS for surgery or radiotherapy as further HIFU treatment was not recommended and salvage would be too expensive.

    This all resulted in a total cost to me of over 17,000, a lot of pain, anguish and anticipation in that 2.5 years, only to find myself in a far worse position than when I first started!
    The claims of 'no incontinence' and 'no ED' with HIFU were certainly true, but utterly useless for me, as it gave me such a false sense of security then put me squarely back in the danger zone in less than 3 years after treatment!

    Hopefully for everyone, I'm just a one off.
    Best of luck,
    Gary
    UKUSABT.....Sorry to hear about your HIFU outcome.
    I need to ask if you feel HIFU is to blame or the first biopsy.
    As I understand it, you had 3T MRI 3 years ago followed by a Template guided biopsy.
    Usually , a Template guided biopsy is done by placing a brachy type grid over the pernium and taking, depending on the size of the gland, 40 to 100 cores spaced 5mm apart.
    Some refer to this procedure as a Saturation biopsy. It is the most comprehensive of all biopsies.
    Properly done it will reveal 95 Percent of all cancer .
    Your biopsy evidently did not reveal four Gleason fours on one side of the gland so HIFU was performed on the other side which did show cancer.
    To me , it sounds like this could be a case for even the most comprehensive biopsy available missing the cancer, not the failure of HIFU.
    Let us know.

  3. #23
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    Jul 2013
    Posts
    60
    Received my first post-HIFU PSA of .58. That's almost three times higher than the gold standard <.2 goal after surgery, and I read one study that used <.3 as goal after HIFU. I'm still trying to put it in context. Have not yet talked with either local urologist/surgeon or Dr. Scionti who performed HIFU. I've read that reaching nadir after HIFU takes 3 to 4 months (I'm 3 months out) so perhaps it can go lower. Also read one patient's statement that HIFU can't achieve an undetectable PSA because the sac is still in there. Of course, whether the PSA stays flat or rises is the most important indicator, so I will get an answer of some kind within the next year.

    UPDATE: Dr. S says that my PSA is fine, and that the <.2 is achieved through HIFU only through aggressive treatment, including destruction of the urethra and nerve bundles. When nerve bundle and urethra are spared, as mine were, higher levels of PSA are expected but that has nothing to do with risk of recurrence.
    Last edited by DaDavid; 05-31-2016 at 04:18 PM. Reason: Update info
    David W

    PSA:
    1/04: 2.3
    2/09: 3.2
    3/12: 3.9
    5/13: 4.1
    5/14: 4.5
    8/15: 4.9 (10.5 years to double)
    10/15: MRI, two lesions, equivocal suspicion
    11/15: Biopsy positive, in 9/14 cores, both lobes, Gleason 3+3=6
    11/15: CT scan, PCa confined to prostate
    12/15: Researching treatment choices.
    2/16: Scheduled for HIFU on 2/26/16 with TURP laser vaporization 3 days before (to reduce size of prostate to <40 cm)
    2/16: TURP Laser vaporization peformed pre-HIFU even though prostate was <40cc. Uro recommended to minimize risk of blockage post-HIFU
    2/1: HIFU on 2/26/16
    3/16: Catheter removed 3/3/16. No incontinence issues.
    5/16: First post-HIFU PSA 0.58
    7/16: PSA 1.13 (contemporaneous with blood in urine after 30+ mi. bike ride)
    9/16 PSA 1.48
    11/16 PSA back down to 0.59 (Whew! What a relief it is!)
    12/16 PSA 1.12
    1/17 PSA 0.60
    2/17 PSA 0.47
    4/17 PSA 1.03
    7/17 PSA 0.44
    10/17 PSA 0.13
    5/18 PSA 0.24
    9/18 PSA 0.11

  4. #24
    Experienced User
    Join Date
    Jul 2013
    Posts
    60
    I saw my local uro last week (who had advocated for surgery and said prior to treatment that he had not seen good results from HIFU) and he was very pleased with my 0.58 PSA. I thought he might say that surgery would have lowered it to <.2 but he did not. He felt my reading was a very good outcome at 3 months, and I will go back for another PSA in 3 more. Also, I spoke with another person online (who had a similar Gleason profile to mine) who was treated by Dr. S with HIFU four years ago. His PSA bounced around some from .3 to .6 and back to .4 , where it's been flat for 3 years. That is also encouraging to me.
    David W

    PSA:
    1/04: 2.3
    2/09: 3.2
    3/12: 3.9
    5/13: 4.1
    5/14: 4.5
    8/15: 4.9 (10.5 years to double)
    10/15: MRI, two lesions, equivocal suspicion
    11/15: Biopsy positive, in 9/14 cores, both lobes, Gleason 3+3=6
    11/15: CT scan, PCa confined to prostate
    12/15: Researching treatment choices.
    2/16: Scheduled for HIFU on 2/26/16 with TURP laser vaporization 3 days before (to reduce size of prostate to <40 cm)
    2/16: TURP Laser vaporization peformed pre-HIFU even though prostate was <40cc. Uro recommended to minimize risk of blockage post-HIFU
    2/1: HIFU on 2/26/16
    3/16: Catheter removed 3/3/16. No incontinence issues.
    5/16: First post-HIFU PSA 0.58
    7/16: PSA 1.13 (contemporaneous with blood in urine after 30+ mi. bike ride)
    9/16 PSA 1.48
    11/16 PSA back down to 0.59 (Whew! What a relief it is!)
    12/16 PSA 1.12
    1/17 PSA 0.60
    2/17 PSA 0.47
    4/17 PSA 1.03
    7/17 PSA 0.44
    10/17 PSA 0.13
    5/18 PSA 0.24
    9/18 PSA 0.11

  5. #25
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    Join Date
    Jul 2013
    Posts
    60
    AUA 2016 Presentation on HIFU

    At the 2016 American Urology Association meeting, AUA presented a panel entitled HIFU: Hope or Hype. Here is a short video summary from the moderator, who said that HIFU shows promise for focal treatment of a portion of the prostate with fewer side effects. But he says that an Australian uro, Nathan Laurentschuck, spoke and was somewhat negative on whole gland HIFU because it can cause side effects and is not as effective as surgery. But I note that his website reveals that his practice is focused on robotic surgical removal of the prostate.

    http://www.medpagetoday.com/Prostate...er-Videos/1718

    UPDATE: An article from Medscape, including quotes from the presenters: http://www.medscape.com/viewarticle/863037
    Last edited by DaDavid; 06-16-2016 at 08:54 PM. Reason: update
    David W

    PSA:
    1/04: 2.3
    2/09: 3.2
    3/12: 3.9
    5/13: 4.1
    5/14: 4.5
    8/15: 4.9 (10.5 years to double)
    10/15: MRI, two lesions, equivocal suspicion
    11/15: Biopsy positive, in 9/14 cores, both lobes, Gleason 3+3=6
    11/15: CT scan, PCa confined to prostate
    12/15: Researching treatment choices.
    2/16: Scheduled for HIFU on 2/26/16 with TURP laser vaporization 3 days before (to reduce size of prostate to <40 cm)
    2/16: TURP Laser vaporization peformed pre-HIFU even though prostate was <40cc. Uro recommended to minimize risk of blockage post-HIFU
    2/1: HIFU on 2/26/16
    3/16: Catheter removed 3/3/16. No incontinence issues.
    5/16: First post-HIFU PSA 0.58
    7/16: PSA 1.13 (contemporaneous with blood in urine after 30+ mi. bike ride)
    9/16 PSA 1.48
    11/16 PSA back down to 0.59 (Whew! What a relief it is!)
    12/16 PSA 1.12
    1/17 PSA 0.60
    2/17 PSA 0.47
    4/17 PSA 1.03
    7/17 PSA 0.44
    10/17 PSA 0.13
    5/18 PSA 0.24
    9/18 PSA 0.11

  6. #26
    Newbie New User
    Join Date
    Jun 2016
    Posts
    1
    I would like to share my personal experience with HIFU. I was diagnosed with PC and after an MRI and targeted biopsy was told by my doctor that I am good candidate for HIFU that is now approved in US and can be done at a cost of $25,000. Some research indicated that a HIFU procedure using a more advanced Focal One machine could be done in Europe and I chose a clinic in Lyon France, where the cost was quoted at 6,500 Euros. When I arrived in Lyon, they did another MRI and a biopsy and discovered a lot of bad spots that were missed by a doctor in US. When compared side by side, an MRI image from US looked over exposed with little contrast and rather hard to make out. It was determined that I am not a good candidate for HIFU and I was sent back to US for surgery. I hope this post helps those seeking a HIFU treatment: go for a second opinion, choose a clinic with a dedicated prostate MRI, explore treatment options in Europe.

  7. #27
    Experienced User
    Join Date
    Jul 2013
    Posts
    60
    That's good information and advice. I had not heard of Focal One but did a search, and see it is was released in 2013 by Edap, same company that manufactures Ablatherm, which is one of the machines currently being used in US, along with Sonablate, which is what my HIFU uro used. Since the Focal One is designed specifically for focal therapy of only part of the prostate, have you considered HIFU for the entire prostate? In discussions, my uro said that he prefers Sonablate because it allows him to precisely guide the ultrasound. The Ablatherm does not allow for as much user input from doctor once it starts. He felt that he could achieve better results with Sonablate and has used both machines, if I recall. He has done many, many HIFU procedures.

    I'm sorry that the Lyon treatment wasn't feasible. The recommendation for a second opinion on HIFU is a very good one. There are many more uro's offering HIFU now who are eager to provide evaluations, but the general advice to find an experienced practitioner remains very important as well.

    BTW Lyon is considered the culinary capital of France. I'm sure I could have eaten up much of the cost savings if I had gone there!
    Last edited by DaDavid; 07-01-2016 at 02:56 PM.
    David W

    PSA:
    1/04: 2.3
    2/09: 3.2
    3/12: 3.9
    5/13: 4.1
    5/14: 4.5
    8/15: 4.9 (10.5 years to double)
    10/15: MRI, two lesions, equivocal suspicion
    11/15: Biopsy positive, in 9/14 cores, both lobes, Gleason 3+3=6
    11/15: CT scan, PCa confined to prostate
    12/15: Researching treatment choices.
    2/16: Scheduled for HIFU on 2/26/16 with TURP laser vaporization 3 days before (to reduce size of prostate to <40 cm)
    2/16: TURP Laser vaporization peformed pre-HIFU even though prostate was <40cc. Uro recommended to minimize risk of blockage post-HIFU
    2/1: HIFU on 2/26/16
    3/16: Catheter removed 3/3/16. No incontinence issues.
    5/16: First post-HIFU PSA 0.58
    7/16: PSA 1.13 (contemporaneous with blood in urine after 30+ mi. bike ride)
    9/16 PSA 1.48
    11/16 PSA back down to 0.59 (Whew! What a relief it is!)
    12/16 PSA 1.12
    1/17 PSA 0.60
    2/17 PSA 0.47
    4/17 PSA 1.03
    7/17 PSA 0.44
    10/17 PSA 0.13
    5/18 PSA 0.24
    9/18 PSA 0.11

  8. #28
    Newbie Regular User
    Join Date
    Oct 2016
    Posts
    10
    I'm just a couple weeks out from my Dx and exploring my treatment options. My plan (if you can call it one) is to see a surgeon who specializes in robotic RP, an experienced doc who performs RT and, to this thread's point, see an experienced HIFU guy.

    Can you please shed a little light on how and why you selected your HIFU doc.

    Thanks in advance for any advice.
    PCa Dx Sept. 2016, age 58. Biopsy right side, 3+3, two of eight cores, one core = 2MM, less than 5%. Biopsy left side, 3+4, five of eleven cores, one core = 8MM, 60%. PNI seen on both sides. No lymph perm seen.
    PSA- 11/12 = 3.52, 6/16 = 6.43, 7/16 =8.08 8/16 = 5.2 (15%free).

  9. #29
    Steve, HIFU remains questionable at this point. I'm been reading some impressive articles lately about SBRT, for which 10 year results are now available. You might want to research that treatment also.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA 4.4, fPSA 24, PHI 32
    Hopefully, I can remain untreated. So far, so good.

  10. #30
    Experienced User
    Join Date
    Jul 2013
    Posts
    60
    Quote Originally Posted by steveinErie View Post
    Can you please shed a little light on how and why you selected your HIFU doc.

    Thanks in advance for any advice.
    Steve,
    Dr. Scionti in Sarasota has probably done more HIFU treatments than any other uro in the US, since he was performing HIFU for years in Bahamas before FDA approved it. There are many more drs. offering it now, including some at academic teaching hospitals, but as I understand, there is a learning curve and you don't want to be one of the first 100 or so HIFU cases for a newly trained urologist. When I was considering HIFU, I found him to be easily accessible and knowledgeable. I had a fairly long phone consultation with him after sending my biopsy report.

    To update my progress for benefit of you and others considering HIFU, my PSA has risen from 0.58 at 3 months out, to 1.13 at 5 months, and 1.48 at 7 months. I go back in for next PSA in November. Frankly, that level of increase concerns me, but Dr. S says that with HIFU, you are going to have some PSA because the prostatic sac is still there. (I also wonder what, if any, effect on PSA the ablated prostate tissue might have?) Dr. S says if it goes above 2, then we would need to look at other options, including another biopsy, although biopsy after HIFU is different since the tissue is destroyed.

    If you decide to seriously consider HIFU, I would be glad to answer questions and provide you with my thoughts on how I would maximize the treatment if I knew then what I know now about how to minimize the side effects.

    Best of luck as you consider your options.
    David W

    PSA:
    1/04: 2.3
    2/09: 3.2
    3/12: 3.9
    5/13: 4.1
    5/14: 4.5
    8/15: 4.9 (10.5 years to double)
    10/15: MRI, two lesions, equivocal suspicion
    11/15: Biopsy positive, in 9/14 cores, both lobes, Gleason 3+3=6
    11/15: CT scan, PCa confined to prostate
    12/15: Researching treatment choices.
    2/16: Scheduled for HIFU on 2/26/16 with TURP laser vaporization 3 days before (to reduce size of prostate to <40 cm)
    2/16: TURP Laser vaporization peformed pre-HIFU even though prostate was <40cc. Uro recommended to minimize risk of blockage post-HIFU
    2/1: HIFU on 2/26/16
    3/16: Catheter removed 3/3/16. No incontinence issues.
    5/16: First post-HIFU PSA 0.58
    7/16: PSA 1.13 (contemporaneous with blood in urine after 30+ mi. bike ride)
    9/16 PSA 1.48
    11/16 PSA back down to 0.59 (Whew! What a relief it is!)
    12/16 PSA 1.12
    1/17 PSA 0.60
    2/17 PSA 0.47
    4/17 PSA 1.03
    7/17 PSA 0.44
    10/17 PSA 0.13
    5/18 PSA 0.24
    9/18 PSA 0.11

 

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