Has anyone had experience with the newest treatment to the US....HIFU( High Intensity Focal Ultrasound?

[rfarley01]

I have been following a rollercoaster of PSA readings since 2011. I was waiting for FDA approval and now that its approved, its a $$ out of pocket only procedure. I have spoken to a few HIFU patients that say its like they never had PC an were back in their 20s again, no side affects.

[E2-Guy]

A friend of mine had this procedure performed in the Bahamas a few years ago since it was not allowed in the States. He had an infection as a result which took many months to clear up. His PSA prior to the procedure was about 5.0 and dropped to an undetectable level post-procedure. His PSA has now climbed back up to about 2.0; however, a recent 68Ga PSMA scan has identified malignant cells confined to the prostate.

[Hberg08 in reply to E2-Guy]

My husband had HIFU done in Germany 10yrs ago. At the time his Dr. was not sure if they were able to remove all the cancerous cells. The actual procedure was done as outpatient and we went back to our Hotel; went back the following day for a check up. Went for lunch, enjoyed our beautiful Castle Hotel near Heidelberg another day & then spent several more days with family in Bonn before flying back to the US.

Everything was fine until this past November....the cancer is back. We are seeking Proton Beam Therapy and are faced with the same issue you are... Insurance KAISER will not pay....this after his Kaiser Dr. asked if he would like a referral to the Proton Center close to us and Kaiser Member Services adv, us " You only need to pay the daily co-pay @ $45 per day"...that be doable!

Well, his Doctor's Supervisor refused the referral...and Member Services misinformed us. His request has been denied twice! When asked why, only explanation was "MEDICALLY UNNECESSARY" and at the same time his Dr. wants him to do something soon. We are seeking a less invasive treatment and keep a quality of life!

60years my dear Mom said: "Don't get sick in America"

All the best to you

[Tall_Allen]

You should understand that the way they got FDA approval was through a loophole. It was approved for removal of prostate tissue (like a TURP), and not for treatment of prostate cancer (which the FDA specifically refused to approve.)

Please read the following before you shell out the cash:

pcnrv.blogspot.com/2016/12/...

Both the AUA and the EAU consider it investigational. There is not enough long-term follow-up to recommend it, and it should only be used in the context of a clinical trial.

[patandemma]

Is he a candidate for IMRT ? I am guessing one of the big full-service Kaisers as opposed to the smaller regional ones has an IMRT unit. It's cheaper and may be as good

[Hidden]

I had HIFU surgery Oct '16. Not available in AZ so I went to San Francisco (Dr Lazar). I was dx'd gleason 8, with a low PSA of 2.7. My bone and abdominal scans were clear. I was told that I wasn't a good candidate for RP since I had had TURP surgery 10 years prior for BPH. TURP is a good thing when it comes to HIFU. I've had no quality of life side effects, like incontinence or sexual dysfunction and my PSA remains undetectable a year and a half later. I had been directed toward EBRT radiation treatment. That would have been 45 treatments, which require drinking a lot of water prior in order to 'lift the bladder away from the prostate' in order to target it more easily. Well, my bladder took a beating with BPH and I was concerned that I lacked the capacity to fill my bladder sufficiently to follow that requirement. I think they are splitting hairs when they say HIFU is approved only for prostate tissue ablation. HIFU is high intensity focused ultrasound -- with very precise feedback as to where the energy is being focused and also to what temperature the tissue is being heated. Gripe is that HIFU hasn't had ten years of results in the US and is therefore somewhat 'investigational'. Well it is has been in use in he world for over 20 years with over 20,000 patients. I consider it odd that 'cryosurgery' is approved for prostate cancer -- it is kind of the mirror image of HIFU -- it freezes tissue instead of heating it -- but it is not focused cold and therefore a lot less precise. As far as the cancer returning -- that is always a possibility for any kind of PC treatments, even when the prostate is removed entirely. Cost is a factor. It isn't yet covered by Medicare so it was out of pocket for me.

[rfarley01 in reply to Hidden]

WSOPeddie: a coworker had a total RP in 2010, with not quality of life after, and cancer came back near the surgery site. He lasted until summer 2017. Another coworker had the HIFU in 2010, in the Bahamas, all out of pocket cost, his numbers are bearly noticably at .01

[gordee09]

I had HIFU from Dr. Scionti Sept 29th,2017 in Sarasota...I had been diagnosed with low grade (Gleason 3/3) in January 2015 with PSA over 9 over a 5 year period. Continued to rise to 15 over a 2 year period so I finally got an MRI which revealed a tumour of anterior apex of the prostate to the mid gland with ECE PIRADS 5 (19 mm in size).

I was scheduled for a complete removal of the prostate Sept 19th and was fearful of the results concerning ED and Incontinence. I called Dr Scionti and numerous other Urologist that did HIFU and chose Dr Scionti as he got back to me (via phone) and answered every concern I had. I researched his practice and his success stories (called a few of his patients ). I was on a plane from Edmonton Canada within a week and had a successful surgery (3 hours). I was eating lunch within 2 hours and went on a boat ride for over 8 hours the day after. Played 4 rounds of golf within the 1st month...Recently got my first PSA (3 months) and was 1.2 and at six months (.6). Very pleased about the quality of care and about the results....Highly recommend Dr Scionti....100% committed Urologist ....Happy to talk to anyone to discuss my journey.....

[gordee09]

16 months later my psa is still at.6....see post above