HIFU Info Required

robpue
robpue Member Posts: 3

My Doctor has found Prostate Cancer in me, my gleason score is 6 and PSA is 8, He is recommending HIFU procedure as treatment but since I understand has been approved by FDA october 2015 And there is not much info in the web site I would like to hear some HIFU experiences.

Its this a really good procedure?

Is it Safe?

Since the prostate is treated but not removed from your body, will that could affect in the long term?

Does someone had bad experience with this procedure?

If you have been in this experience in the past Would you please respond. 

I Really thank you for your answers

Robpue

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Robpue,
    I am sory for your

    Robpue,

    I am sory for your diagnosis.

    As you are aware HIFU is a new Active Treatment in the United States that is available to a certain group of  patients who qualify for this treatment type. There are also other choices of treatments to include Active Surveillance.

    In order to understand where you currently stand, I hope that you can provide more information about your diagnosis.

    How many cores were taken, how many were positive; what was the involvement, that is the percent cancer of each core that was positive. Please list your PSA history. Was the digital rectal exam normal? Any other findings in the pathology...........(Since determining Gleason scores is subjective, did you have a second opinion of your pathology by a world class pathologist that specializes in prostate cancer so you will not be over or under treated. )

    Did you have any other diagnostic tests?
    Did you have a T3 multiparametric MRI that can show extracapsular extention, or suspicious lesions in the prostate?

    What is your age?

    ...................

    I am familiar with HIFU.

    Basically the procedure is MRI guided for a High Intensity Focused Ultrasound tissue ablation with Sonablate for a prostate cancer outpatient treatment. The procedure is new; there are docs that use a T3.0 magnet (the hhighest definition in clinical practice) and others who use1.5T to guide the Sonoblade. Additionally , most do the procedure in MRI real time, while the procedure is also done by locking the results of the MRI to a three dimenional biopsy machine that interfaces with the Sonoblade).

    Pretty much the above describes how HIFU is administered.

    Since this procedure is new, the question arises of how effective this procedure is. Does the MRI machines provide enough definintion to find all the suspicous lesion of cancer? Is current technology adequate for this procedure?

     

    Here is an article of a local urologist in the LA, who is now doing this procedure. In fact he will be speaking Thursday evening at the Prostate Forum of Orange County, if you are in this area.

    http://www.beckersasc.com/asc-turnarounds-ideas-to-improve-performance/dr-ashok-kar-performs-mivip-surgery-centers-first-hifu-prostate-tissue-ablation-with-sonablate.html


    Also there is a discussion site at USTOO.org where there is a thread where HIFU treatment is discussed to the 9th degree, so, if and when  you decide to pursue this treatment , I suggest that you investigate .


    I recommend that you attend local support groups....USTOO sponsors many local groups...also read books , internet searches ,and ask questions here....We are here for you.


    Best

    H



  • Old Salt
    Old Salt Member Posts: 1,314 Member
    HIFU not approved as a prostate cancer therapy in the USA

    It's my understanding that the instrument/device to practice HIFU was approved by the FDA for prostate tissue ablation, not for the treatment of prostate cancer. 

    http://www.fda.gov/downloads/medicaldevices/newsevents/workshopsconferences/ucm467131.pdf

    And, IMHO, why would one use a procedure that hasn't been approved by the FDA when other proven therapies exist for 'low(er) grade' prostate cancer? In addition, insurance may not cover HIFU as a prostate cancer therapy (in the USA).

    PS: THere's at least one clinical trial in the USA, but no new patients are accepted

    https://clinicaltrials.gov/ct2/show/NCT00770822?term=HIFU&rank=29

  • robpue
    robpue Member Posts: 3

    Robpue,
    I am sory for your

    Robpue,

    I am sory for your diagnosis.

    As you are aware HIFU is a new Active Treatment in the United States that is available to a certain group of  patients who qualify for this treatment type. There are also other choices of treatments to include Active Surveillance.

    In order to understand where you currently stand, I hope that you can provide more information about your diagnosis.

    How many cores were taken, how many were positive; what was the involvement, that is the percent cancer of each core that was positive. Please list your PSA history. Was the digital rectal exam normal? Any other findings in the pathology...........(Since determining Gleason scores is subjective, did you have a second opinion of your pathology by a world class pathologist that specializes in prostate cancer so you will not be over or under treated. )

    Did you have any other diagnostic tests?
    Did you have a T3 multiparametric MRI that can show extracapsular extention, or suspicious lesions in the prostate?

    What is your age?

    ...................

    I am familiar with HIFU.

    Basically the procedure is MRI guided for a High Intensity Focused Ultrasound tissue ablation with Sonablate for a prostate cancer outpatient treatment. The procedure is new; there are docs that use a T3.0 magnet (the hhighest definition in clinical practice) and others who use1.5T to guide the Sonoblade. Additionally , most do the procedure in MRI real time, while the procedure is also done by locking the results of the MRI to a three dimenional biopsy machine that interfaces with the Sonoblade).

    Pretty much the above describes how HIFU is administered.

    Since this procedure is new, the question arises of how effective this procedure is. Does the MRI machines provide enough definintion to find all the suspicous lesion of cancer? Is current technology adequate for this procedure?

     

    Here is an article of a local urologist in the LA, who is now doing this procedure. In fact he will be speaking Thursday evening at the Prostate Forum of Orange County, if you are in this area.

    http://www.beckersasc.com/asc-turnarounds-ideas-to-improve-performance/dr-ashok-kar-performs-mivip-surgery-centers-first-hifu-prostate-tissue-ablation-with-sonablate.html


    Also there is a discussion site at USTOO.org where there is a thread where HIFU treatment is discussed to the 9th degree, so, if and when  you decide to pursue this treatment , I suggest that you investigate .


    I recommend that you attend local support groups....USTOO sponsors many local groups...also read books , internet searches ,and ask questions here....We are here for you.


    Best

    H



    I'm 64 years Old, The Biopsia

    I'm 64 years Old, The Biopsia results came out with 5 of 7 cores, with  a  Gleason 6 and my last PSA is 8

    The rectal exam went normal, the prostate is small size for people of my age but is not soft as should be.

    I had a Gammagram study that went negative.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    robpue said:

    I'm 64 years Old, The Biopsia

    I'm 64 years Old, The Biopsia results came out with 5 of 7 cores, with  a  Gleason 6 and my last PSA is 8

    The rectal exam went normal, the prostate is small size for people of my age but is not soft as should be.

    I had a Gammagram study that went negative.

    .
    In order to help determine how extensive the cancer is, and your options for treatment types, it is important for you to look at your pathology report, and see what is written about the percent of cancer that is  found in the each of the five cores that were positive for cancer. That is, what percent of the Gleason 6 is in each of the five cores.

     

    Also, what the rate of change is for your PSA's...that is at what rate it is increasing.

     

    ......

    "There are two types of HIFU treatment. Whole-prostate HIFU treats the whole prostate. Focal HIFU treats a smaller area of the prostate. And ask your doctor or nurse which type of treatment might be suitable for you."

     

    Basically if there is lot of involvement, the whole-prostate will be given HIFU. There is a very very high incidence of impotence from this procedure..... It may very well be that you may need to treat the entire prostate with  HIFU ...thus the reason for the above questions, about  the results of your tests.....usually HIFU for the whole gland, is given for recurrent prostate cancer, that is, when primary treatment has failed.

     

    If the above is the case, then there is another treatment, that I strongly recommend that you investigate. It is  SBRT (aka machine delivery names Cyberknife , NOvalis, etc) that will provide excellent results with only 4 or 5 radiation treatments. The side effects are very minimal. After each treatment, you will for the most part not suffer any immediate discomfort or side effects, and can go about your routine business, There are other posters to this sight, who have successfully had this treatment type, who may wish to comment for your benefit,

     

    In my previous post I discussed focal HIFU, which is very new and unproven at this time. There are a couple of docs who are pioneers for the method, one is, as I remember Dr.
    Sperling in the New York area, and the other is a doctor in Texas, whose name will be found in the USTOO thread that I referrence above.

    .................

     

    By the way, I wonder if your doctor does the HIFU that is recommended to you?
  • MEtoAZ
    MEtoAZ Member Posts: 37
    Looked into HIFU but opted for Cyberknife instead

    The urologist that originally did the biopsy that discovered my cancer (PSA 5.1, Biopsy 12/17/2015 showed 2/12 cores cancerous, 3+3 and 3+4), Dr Pratik Patel, recommended surgery as I was 52 at the time.  He is also on the 11 member National Urological Review Board that certifies new procedures so has a decent reputation among Urologists.  I scheduled surgery right away and then after the shock of having cancer wore off, I started doing my homework on other options.  I discussed HIFU with him and he had an interesting take on rather it would ever achieve status as a mainstream treatment in the US.  New treatments are approved in part based on their 10 year outcome as compared to other treatments.  Because it is targeted at early stage cancer, HIFU's 10 year, survivability is no different than active surveillance from his perspective so why approve a procedure that is the same as doing nothing.  Not saying I agree with that, just relaying what an Urologist thought about HIFU.     

    I found out about Cyberknife on this forum and when I researched it, I discovered that the cure rates are now comparable with surgery (93% after 10 years), with significantly fewer side effects.  Because it is newer than some other options, it has only recently had statistical numbers for 10 year comparisons.  It was the side effects with surgery that had me concerned and the potential that my cancer may or may not have spread to the periphery of my prostate.  The periphery was easily treatable with Cyberknife, whereas it might require non-nerve-sparing surgery on that side of prostate which would further increase the chance of impotence.   HIFU seemed viable but follow-up care when you get it down outside the US seemed a little dicey to me.  I also didn't like having to leave the states to get treatment.  The equipment that is available in the states at this time and approved is an older generation which again made HIFU less attractive.  It is also quite expensive compared to most other options which are covered by insurance.  If the current generation was available state-side and it was covered by insurance, it seems likely to be effective with early stage cancer.  If it was mainstream and available with latest tech locally, I may well have went that route.

    If CyberKnife is available near you, I would at least check it out.  Like all other doctors, they will recommend their approach I suspect but the more information you have, the more comfortable you will likely have that you made the best decision for you.  I just completed by 5 day Cyberknife treatment this week, I will know how successful over the coming months but my doctor is very confident so time will tell.  Other than the diet during the treatments, this was certainly a procedure that had minimal impact on my day to day life and once finished, I am completely back to normal routine.

    Lastly, Active Surveillance may be most appropriate for you at this time if you can handle having cancer and just monitoring it without going after it directly.

    In either case, with a Gleason of 6, you should have time to make a decision.  Most prostate cancer grows slowly and with your numbers, it does not seem like something that requires attention immediately.  In the end, whatever path you take, just embrace it and move forward with it.  

    Live well

     

  • guiocopiano
    guiocopiano Member Posts: 2
    HIFU

    I had HIFU done 4 years ago. My cancer is gone and my PSAs have been normal since. Still get wonderful hard erections too............