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Thread: Sticky: What I Need to Know about HIFU

  1. #11
    Experienced User
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    Jul 2013
    Posts
    60
    John Grisham (yes, that John Grisham) has now weighed in on HIFU, in a manner of speaking. He has published a free "book" (really more of an e-pamphlet) you can download from Amazon advocating the use of focused ultrasound in the treatment of brain cancer. http://www.amazon.com/The-Tumor-A-No...cm_rdp_product

    I was not previously aware of any HIFU for brain cancer, but he uses the example of a 35 y/o man diagnosed with brain cancer who, despite conventional treatment and surgery, dies within a year of diagnosis. He then says if the man had been born in 1995, rather than 1985, he could have lived several more years due to treatment by focused ultrasound. Grisham serves on the board of Focused Ultrasound Foundation, based in Charlottsville, where Grishman lives. http://www.fusfoundation.org/ Here is link to the page from foundation's website on prostate cancer. http://www.fusfoundation.org/disease...rostate-cancer

    Those interested in HIFU may enjoy reading this brief (takes about 30 minutes) publication by GRisham. At a minimum, I'm sure Grisham's popularity will help raise public awareness of HIFU and its potential. I wrote a review on Amazon that points out that the future is NOW for HIFU to treat prostate cancer. http://www.amazon.com/gp/customer-re...SIN=B01AUYDNI6
    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. #12
    Experienced User
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    Jul 2013
    Posts
    60
    Here is a discussion from a recent Harvard Medical School publication about HIFU and other emerging methods of treatment. This was last update in 2011, well before FDA approval in October 2015. http://www.harvardprostateknowledge....rostate-cancer
    Last edited by DaDavid; 03-04-2016 at 05:43 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

  3. #13
    Experienced User
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    Jul 2013
    Posts
    60
    A new study released last week at annual European urology group meeting has encouraging news about HIFU: "93% of patients who underwent HIFU alone to remove their prostate tumor were still cancer-free and did not need any surgery or radiotherapy 5 years after treatment." News article here: http://www.medicalnewstoday.com/articles/308153.php. The study involved 625 men between 2004-2015. "Only 1-2% of the HIFU patients experienced long-term incontinence, and just 15% suffered erectile dysfunction. These figures compare favorably with men who have surgery, where around 30-60% experience these distressing side effects."

    For a personal story, I completed my HIFU treatment on February 26, 2106, in Sarasota with Dr. Scionti. Prior to HIFU, I had a laser vaporization TURP of the prostate 3 days before the HIFU. Dr. S recommended this to help create a clear channel to minimize the risk of blockage after HIFU from the ablated (i.e., "cooked") prostate tissue. His initial examination showed my prostate at 35 cc, less than the 40cc max previously from my local MRI. I asked if I could avoid the TURP, but he recommended proceeding due to the better results and less blockage chances when the channel is opened. That procedure was mostly painless as I was asleep, but I had to wear a catheter for 24 hours after. We had two additional days to wait before the HIFU, which was performed on Friday, 2/26. The procedure took almost four hours, although I think it was lengthened in part due to Dr. Scionti doing training to other urologists who were observing my procedure. Despite some stories I've read that HIFU patients go for a walk and out to dinner on the day of procedure, that was not my experience. Due to the anesthesia, I was very groggy and went back to the condo and slept most of afternoon before my wife cooked a delicious meal of local seafood. We had an 11 a.m. plane out of Tampa the next morning, and I felt well enough to get up, pack, load suitcases, etc. I spoke with Dr. S by phone and was doing well, so there was no need for additional exam.

    The catheter was no fun, but manageable. There was almost no soreness in the prostate area. One week after HIFU, the catheter was removed at my local uro's office. Now, almost four weeks after, I feel very good. No incontinence, although urine still has a light pink color and slight burn when I begin. As far as ED issues, my equipment is working just about the same as before (which more often than not requires Viagra), except that the ejaculation is retrograde. All in all, I'm very pleased so far, but of course no PSA reading yet. After HIFU, it takes 3 to 4 months to reach the nadir, so I will schedule that for late May and will report back.

    I've had no physical limitations and have exercised as often as possible - walking, eliptical, weights, and recumbent stationary bike. I plan to try my road bike out this week, after determining the best bike saddle to minimize pressure on the prostate area. Can't wait to get back on the bike! I've missed it since November 2015 when my MRI showed two symmetrical lesions near where my sit bones are. (BTW, I still wonder if the biking may have been a contributing factor to PC, but that's another topic.)

    A couple of notes about costs. The pre-HIFU TURP is not included in the HIFU flat fee of $25,000 but was covered under my health insurance, subject to my annual deductible and co-pay. My carrier (Blue Cross) orally told me before HIFU that the HIFU would be covered on an out-of-network basis. I'm still working on that claim and expect it may take awhile to submit and get a final decision abut am optimistic that 40% or so of the HIFU cost will be reimbursed. For those considering HIFU, I would be glad to answer any questions that I can. I feel like I made the right decision for me, found the right doctor to perform the procedure, and would do so again.
    Last edited by DaDavid; 03-22-2016 at 07:38 PM. Reason: elaborate
    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. #14
    Experienced User
    Join Date
    Feb 2016
    Posts
    86
    Very interesting report! Thanks for sharing. Looking forward to hearing back re your PSA in May.

    I think it is important to learn about alternatives to surgery and EBRT. I myself will do 2 treatments of High Dose Brachy as a monotherapy starting next month. I chose this treatment as the side effects of surgery terrified me and the 10 year results from this treatment are at least as effective as surgery for low risk and favorable intermediate risk patients with fewer long term side effects reported.

    Gio
    Enlarged prostate & protastitis since my 30's
    Completely asymptomatic in terms of sexual/urinary function
    PSA 2008 2.4
    PSA 2011 4.06
    PSA 2105 7.0 (free PSA 0.72)
    PCa Dx May 2015 from biopsy age of 64 (2/12 cores 10% involvement)
    Follow-up MRI guided biopsy in February 2016 DXd adenocarcinoma in
    9/20 cores ranging from 5%-70% involvement
    Gleason scores mixed 3+3=6. And 3+4=7
    2 rounds of High Dose Brachytherapy as Monotherapy at Stanford 4/20/16 & 5/5/16
    PSA August 2016: 2.45 (over 50% drop!)
    PSA November 2016: 1.54
    PSA March 2017: 1.46
    PSA June 2017: 1.45
    PSA November 2017: 1.24
    Told to expect PSA "bounces" typical of this therapy and not to worry unless they go up 3X in a row.
    No urinary, bowel or ED side effects noted. Take an occasional 1/2 Viagra or Cialis if I feel I might need it.

  5. #15
    Regular User
    Join Date
    Feb 2016
    Posts
    16
    David:

    Thank you for sharing this. Wish you the best. I look forward to reading more of your update.
    52 at Dx and Surgery
    PSA 1/09 =1.35, 10/10 =1.46, 3/12 =1.57, 11/15 =2.89
    Biopsy results of 2/25/2016
    right base, Gleason 3+3, 2 of 2, 70% specimen involved by tumor, right mid, Gleason 3+4, 2 of 2 cores involved, 70% of specimen involved by tumor,
    DaVinci prostatectomy 6/8/2016 at the University of Chicago Medical Center
    Surgeon was Dr. Gregory Zagaja, who I highly recommend.
    Final pathology:confined to prostate:
    Gleason Score: 7 (3+4); Perineural Invasion: Present; Tumor Volume Estimate: 10%; High-grade P.I.N.: Multifocal; Seminal Vesicles: Negative; Extraprostatic extension: Absent; Peripheral Margin: Negative; Distal (apical) Margin: Negative;
    Sixteen lymph nodes, no tumor present(0/16); Proximal (basilar) Margin: Negative; pTNM: pT2aN0

    Post Surgery PSA: 6wk, on 7/20/16 <0.1

  6. #16
    DaDavid, That article is great news for another, possibly less-damaging alternative to RP and RT for some men.

    But, I am confused about the terminology. I thought that HIFU and FLA were two quite different treatments, one using sound waves, and the other using a laser. Do they do both ablate the prostate tissue by heat? It seems that some terms of their operation appear used in descriptions of both technologies. Any clarification would be appreciated.
    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 has varied up and down from 3 to 10 over the years. Is 4.0 as of September 2019.
    Hopefully, I can remain untreated. So far, so good.

  7. #17
    Experienced User
    Join Date
    Jul 2013
    Posts
    60
    Quote Originally Posted by ASAdvocate View Post
    But, I am confused about the terminology. I thought that HIFU and FLA were two quite different treatments, one using sound waves, and the other using a laser. Do they do both ablate the prostate tissue by heat? It seems that some terms of their operation appear used in descriptions of both technologies. Any clarification would be appreciated.
    My first procedure was a laser vaporization of the area surrounding the uretha inside the prostate. This is a procedure also often performed on men with BPH but without PC to improve flow and symptoms. Focal therapy (whether performed with HIFU or laser) targets small but distinct areas of cancerous tissue in the prostate but spares healthy tissue to minimize side effects. Focal therapy was not an option for me as I had 9 of 14 positive biopsy samples in both lobes. I believe that both laser and HIFU ablate using heat, although I'm not as conversant on laser ablation. Hope that helps.
    Last edited by DaDavid; 03-23-2016 at 01:00 PM. Reason: Clarify/typo
    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. #18
    Experienced User
    Join Date
    Apr 2016
    Posts
    75
    I called about HIFU as an option, but because I have it in both lobes (T2), Gleason 8 and the cancer is pushing outward towards the capsule, I was told I'm not a candidate.
    DOB-9/21/1958, 57 at the time of my surgery
    PSA Feb 2, 2016 = 7.1
    MRI March 2 = definite tumor on right lobe
    Biopsy March 17 - targeted with MRI rendering, 15 cores, 10 positive
    Gleason 3+5=8 (right side aggressive, starting to invade the capsule). Bone scan 4/13, negative
    RALP surgery 5/16/2016. Extra urethra taken (suspicious), sphincter saved. Home 5/17.
    Pathology: lymph nodes clean, right lobe negative margin, left lobe small positive margin. Possible remaining cancer.
    8/26/2016: @ three months: PSA 0.03. 11/18/2016: @ six months: PSA 0.26 <-- still have cancer, referred to a Radiation Oncologist
    DEC 9, begin 6 month course of Lupron (shot) + Casodex (pill). 39/39 radiation sessiongs completed.
    Next four tests <.01 -- .03 -- .58 -- 2.7 -- PSMA-PET scan on 7/17/18 -- current test 13.5

    Recovery from surgery: 95%. Recovery from radiation: 70%, sexual and minor continence problems.

  9. #19
    Experienced User
    Join Date
    Jul 2013
    Posts
    60
    For men considering HIFU to minimize side effects, I want to advise you about one additional potential side effect, although not directly from the HIFU.

    Uro's often advise a pre-HIFU TURP to minimize the potential for blockage after the procedure. The TURP typically uses a laser inserted to burn a clear, open channel through the prostate and reduce the overall size. If your goal is to avoid side effects and try to preserve as much of a normal sex life as possible, please be aware that a TURP has a very high risk of resulting in retrograde or dry orgasms, where the ejaculate goes into your bladder.

    That happened to me.

    Initially, I was told I needed the TURP because my prostate was >40 cc's (which is the size limit that HIFU can treat), but my urologist later determined it was only 35 cc. I did not have any of the other normal indicators leading to a TURP (e.g., urinary difficulty, frequent nighttime urgency, etc.) Based on that, I asked if I could avoid the TURP, but he advised going ahead to minimize chance of later blockage.

    Frankly, I was unaware of the high incidence of RE after TURP, nor was I aware of how it would affect me. Many doctors tell patients the orgasm with RE will still be "normal" and "that orgasm happens in your brain anyway." From my personal experience (and that of many others who have posted online), that's hogwash. The quality and intensity of the orgasm is much less satisfying. I compare it to being on a roller coaster and riding to the top of the biggest hill, waiting for the adrenaline rush of the descent, and then simply stopping in place. (I'm only two months out from HIFU, so I hope things may improve over time, but for now . . . ) If I had known about that my chance of a post-HiFU blockage was, say, 50% without a TURP, but that my chance of RE was 100% with TURP, I would have probably skipped the TURP and taken my chances. Many other men seem to have the same feeling. (Not sure if this is allowed but here is link to a heated forum discussion on RE after TURP: http://www.medhelp.org/posts/Urology...n/show/1002117)

    Of course, the risk of RE occurs whenever there is a TURP, such as to relieve BPH, so it's not a risk unique to HIFU. But if you are considering HIFU and TURP, I strongly suggest a frank discussion of the risks and benefits of the TURP.

    Also, there is a newer epTURP (ejaculate preserving TURP procedure) which preserved normal ejaculation in 90% of the patients studied. http://www.ncbi.nlm.nih.gov/pubmed/23952037. Unfortunately, I was not aware of this study until after my TURP.
    Last edited by DaDavid; 07-05-2016 at 09:01 PM. Reason: revise and clarify
    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

  10. #20
    Newbie New User
    Join Date
    Nov 2013
    Posts
    1
    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

 

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