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HIFU EXPERIENCE

Posted , 17 users are following.

ES28567
ES28567

I have decided to have the HIFU procedure and will document my experience for anyone that in the future who is considering this procedure. My PSA has been 18.8, 18.5 and 17.8 in the last 10 months. MRI showed 4 areas of concern. 22 core Biopsy only came up with one core with 5% and Gleason score of 3+3=6. However, the urologist (who is doing the HIFU procedure) thinks (because of the high PSA score) that the urologist who did the biopsy missed the targeted area and believes the Gleason score is really higher. The only way to know is to do another biopsy which there is not much point as we already know there is cancer. The other 3 areas of concern are considered pre-cancerous. I also had a bone scan and there is no sign of metastasis. So...after what seems like endless hour/weeks/months of research, I knew I did not want a prostatectomy or radiation treatment (if at all possible) and settled on the HIFU procedure. My procedure is scheduled in 2 days and my post here is to document my experience. If anyone has questions along the way, let me know and I will respond. If others who have had the HIFU procedure want to chime in, (especially if your experience is different than mine) you are more than welcome to post.

0 likes, 125 replies

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  • tjs17151
    tjs17151 ES28567

    Posted

    Hang in there and the best of luck to you.
  • christian90899
    christian90899 ES28567

    Posted

    i really want to know the full meaning of HIFU. how is PSA ths soul determinant whether a procedure will be carried out or not?

     

  • andrewcalgary
    andrewcalgary ES28567

    Posted

    I feel you are being rushed to HIFU, you only know you have one core with 5% and Gleason score of 3+3=6, that's hardly a cancer, you might be a good candidate for AS, yes high PSA is a concern, maybe you should consider a second opinion on your MRI or have MRI guided biopsy from a recognizable expert like Dr.Bush, he charges $200 for MRI review and there is none better then him

    • ES28567
      ES28567 andrewcalgary

      Posted

      2andrzej48

      Thanks for your concern about my being rushed. I think many men panic and just want the cancer out and do what their urologist says without doing enough research. My biopsy was MRI guided. However, there is a question as to if it was done correctly. My urologist is very experienced with biopsies but fairly new at guided biopsies. I don't know who this Dr. Bush is but if you want to put his contact info on, that would be great. (You cannot post his website or the auditor will delete your post).

      So to clarify, the PI-RADS scores from the 3T MRI came back with one area at 5, one at 3 or 4 and I don't remember the other two at the moment but I think they were 1 and 2. (I am out of town and don't have those records with me). The reason to move forward is that even though the Gleason score is only 6 and only a small percentage of cancer cells of 5 % in one core, the location is near the seminal vessels and because of the location there is a higher chance/concern it could metastasize.

      The first urologist (who did the biopsy) wanted to just do a prostatectomy because of the cancer AND urinary problems of a large prostate (98cc). His reasoning was we take care of both issues at once. I then went to CTCA for a second opinion. They also looked at the biopsy and not only confirmed the core with cancer but found a second core was also cancerous. They also recommended a prostatectomy as they said it would be almost impossible to shrink the prostate enough for radiation therapy. However they said they would try hormone therapy if I really wanted to pursue that course of action first.

      I did not want a prostatectomy or radiation treatment. (Although there is one radiation treatment that looks promising called Proton treatment). That's when I started looking for other options and through research looked at Focal laser ablation (FLB), HIFU and everything else I could find as an alternative treatment. I talked with the Sperling institute and then two other doctors who do the HIFU procedure (they are not in the same clinic and did not know I was talking with the other). Both HIFU doctors and their radiologists reviewed the 3T MRI images and biopsy reports. They all came to the same conclusion. I know they all have a financial interest to tell me to have their procedure. But the radiologist gets paid regardless so hopefully they will report their findings accurately.

      So, because of the location of the cancer, that is why I have decided to move forward with the HIFU procedure. Otherwise, I would do Active surveillance.

    • j12080
      j12080 ES28567

      Posted

      Here is another option that you should research. Focal Laser Abolation. It is done with the guided biopsy and the effects are minimal. Doctor Walser at UTMB in Galveston TX is preforming this as well as Dr Sperling in Florida. None of the horrible sexual side effects of the other proceedures. Good luck. They only target the acutal lesions. 
    • ES28567
      ES28567 j12080

      Posted

      Hi j12080,

      Actually, FLA was the procedure I was pursuing and how I found the doctor for my HIFU procedure. My HIFU Doctor does FLA (or at least he did) not sure why he is using HIFU instead of FLA. I will see him this afternoon and ask him.

      FYI...the HIFU procedure can be used for both targeted or whole prostate treatment. It also has potential for treating brain and breast cancer. (By the way...I'm not advocating HIFU over FLA, my philosophy is to keep an open mind and choose what is best for each specific case).

    • ES28567
      ES28567 richp21

      Posted

      In Florida. Has been doing the procedure for over 10 years (off shore). He was one of the doctors instrumental in getting FDA approval about 2 years ago.
  • geoff90305
    geoff90305 ES28567

    Posted

    Good luck with the HIFU. Not common here in Australia, so will be interested to see how you go. It seems "lots" of people having the prostatectomy have severe issues for a long time, if not for ever. Though of course, some have no long term issues. We are all different.

    Geoff

  • harveybronx
    harveybronx ES28567

    Posted

    Your HIFU urologist nailed the problem with not performing an in-bore biopsy (within the bore of the MRI machine) that can target the precise spot, real time, that is suspicious in the same mpMRI session.  In the U.S., a year ago, there are only a few facilities that can perform such in-bore biopsies.  And at that same time the in-bore biopsy needle could not be remotely controlled, although such a device was under development.

    Software that overlays the MR image taken at one time onto the image of the prostate within the ultrasound machine (US) at another time and on totally different equipment is not perfect.  And a cognitive overlay, where the urologist looks at the MR image and attempt to aim the biopsy needle in the US image to the suspicious spot on the MR image is even less accurate.

    I researched all this last year when my PSA zoomed up from 8 to 14 in 6 months.   I had an mpMRI that showed no suspicious areas, and shortly thereafter my PSA zoomed back down to 8.  It has gradually risen from 6 to 8 in 16 years.  I previously had (pre-mpMRI) two multi-core, random biopsies, five years apart, all negative.

    • geoff90305
      geoff90305 harveybronx

      Posted

      Now that must be a tad frustrating after all those tests. Unless you have a humungous big prostate, a PSA of 8 as standard is a worry, unless I suppose you have prostatitus, or BPH, and high PSA is expected.

      Geoff

    • harveybronx
      harveybronx geoff90305

      Posted

      Indeed, it has been frustrating.  My prostate is 70cc, and I certainly have BPH.  DRE is normal.  PSA density is still high.  I could have PCa that is undetectable by the mpMRI that would be indolent, and that was also never found by the old-fashioned random biopsies.  If I have prostatitus it has been symptom free, and whatever I do have, I've had since 1999.

      I'm 74y.o. and take no medications.   So, cause of high PSA is unknown.  My free PSA is currently 22%, which also predicts PCa less likely.  I even had a PCA3 test done a few years ago, and the result was borderline, but within the range of error to be meaningless.  

      Lastly, when I awaken  a couple times at night, and my bladder is under high pressure, it takes a while to begin urinating, and then begins with a weak stream that gradually gets stronger, but I don't care.  I have time.  During the day I have no problem.  

      Thanks for responding.

      Harvey

    • geoff90305
      geoff90305 harveybronx

      Posted

      I think what must be remembered the PSA test is just a test to say what PSA is in your system at any given point in time. There are many reasons for higher than "normal". PCA is only one of them. You just prove that a "high" PSA for a long time does not nessessarily say you have proven PCA, just a prostate that puts out a higher amount of PSA.

      Geoff

  • tony96045
    tony96045 ES28567

    Posted

    Hi ES, What you have written seems a bit puzzling, I assume you had a 3T MRI which are pretty good at highlighting suspicious areas.....Your scan(s) should have been given a PI-RADS score which runs from 1 to 5, with 1 being most likely benign up to 5 which is highly likely of malignancy.....assuming that your doc has definitely told you that 3 areas are "pre-cancerous" then that only leaves the 4th area of suspicion which you have been told is a 3+3....so why do they assume that you have a higher gleason grade? .....Unless they are saying that the 3+3 may be upgraded later on.....In which case best to get that path report looked at by someone better qualified.....

    • ES28567
      ES28567 tony96045

      Posted

      Hi Tony,

      Thanks for your reply. Please see my response to 2andrzej48 above. (I tried to answer you questions and his in the same post. The urologist (who is scheduled to do the HIFU procedure) was concerned that because of the high PI-RAD score, and the high PSA score did not match up with the low amount of cancer found, he thinks the inexperience of the urologist who did the MRI guided biopsy that the urologist missed the center of the cancer.

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