hifu trials in US

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  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #22
    Ralphie62 said:

    stats
    So, we had 12 cores on biopsy. Right apex pos less than 5%, Left apex pos x2 10%, Left mid pos 20%.....so pos in 4 out of 12 (we really don't understand about the core results exactly, our doctor really didn't want to get into the path)......could you please tell me how you arranged to have your 2nd opinion on the path?? Can you explain the aureon molecular test?? is that how they eval your progression status??? It's great that you can be on active surveillance. i read a study on ten year A.S....that outcomes were not changed, as long as action was taken when change in stats occurred...........could i ask how old you are?? ralphie's wife

    2nd opinion
    simply contact your doctors office, have them send the parrifin block, the biopsy results to an expert in the field so that you re not under or over treated; johns hopkins is a good option--it is generally covered my medical insurance.

    There are some guidelines for active surveillance, you are on the cusp. , you need to explore this.....look up active surveillance on the internet....geographically where are you located- try to find a teaching hospital near where you live that has a program......one great hospital that I have heard of is UC San Francisco.

    The best test that I have taken which really shows were you stand is the MRI with a Spectrosopy.......(the spectoscopy is considered investigational and you have to pay extra for this, but it makes the results more accurate.........(if cost is a concern, look into a clinical trial)0

    The molecular test---a new test that mthematically compares the results from molecular analysis of your parrifin blook and other variables from with an analysis of about a 1000 men who have had radical prostetecmy, 8 years in the future, and shows the likelyhood of the cancer progressing. look up aureon on the computer and contact the company which is in yonker, NY

    Ira
  • gwc
    gwc Member Posts: 8
    #23
    hopeful and optimistic said:

    My Stats
    I glad that Ralphie is a very young 62.........I used to be young......now I feel young on some days.
    Ira
    Active Surveillance at UCLA
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
    Reaching one year aniversity of diagnosis

    on watch and wait
    Are you doing any treatment
    I am 51 had psa 5-5 1 year ago mine has gone down each time now 2.5
    gleason 3+3=6 1 or 12 lobes had cancer. Not sure what I should do should
    I just keep watch and waiting.
  • pcolin71
    pcolin71 Member Posts: 10
    #24
    gwc said:

    on watch and wait
    Are you doing any treatment
    I am 51 had psa 5-5 1 year ago mine has gone down each time now 2.5
    gleason 3+3=6 1 or 12 lobes had cancer. Not sure what I should do should
    I just keep watch and waiting.

    watch and wait
    what did u do to lower gleason?
  • gkoper
    gkoper Member Posts: 173
    #25
    HIFUgal said:

    We talked to not only the
    We talked to not only the nurses at International HIFU regarding high intensity focused ultrasound prior to his treatment, but we talked for a long time to Dr. Scionti, he was completely honest, and told us to phone back anytime we had a question. I also talked to three doctors in Europe, one whom is a friend, all were very supportative of HIFU. While the urologist we have here wouldn't say anything negative, except it hasn't been proven long term, he tried to scare us making it sound like HIFU was given in someone's garage in Mexico. Then we got there and experienced a top notch professional setting and treatment.

    Dr. Scionti stressed that I should call him - day or night on his cell phone, anytime at all - if I had any questions - no matter how stupid they might seem. But I never did, as it was totally painfree without any problems. Dr. Scionti and I emailed back and forth, he demands an email every three days for a few months. After a month there was nothing to say except hi.

    While I may sound like I am advertising for him, he is my only experience with HIFU, except I did meet Dr. Garcia and he was a doll. There were about 5 men in white coats before the treatment all with a look of total confidence, I slept like a baby while waiting for my husband to come out. HIFU is a serious real treatment, I know 7 guys in Europe who were treated back in 2002 - 2204 all are great and cancer free. I also recommended Dr. Uchinda to the guy who lives in Japan as I've read a lot of good reports on him, and he is in Japan.

    Even if the cancer returns I feel very happy that it bought us time without any side effects, every day is important. And cancer can return with any treatment that you chose. Someday HIFU will be the choice for all men....when they really learn about it, instead of being scared off because of $$, money that your urologist will lose if you chose HIFU, or money that you have to spend.

    Hifugal
    Do know where I can find follow-up data on men who have had the HIFU procedure?
    Regards,
    George
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #26
    gkoper said:

    Hifugal
    Do know where I can find follow-up data on men who have had the HIFU procedure?
    Regards,
    George

    George
    Good one!
  • mrshisname
    mrshisname Member Posts: 186
    #27
    randy_in_indy said:

    George
    Good one!

    HIFUgal
    She is now posting on www.dailystrength.org as HIFUisKing. She told me she's been banned from this forum. Maria
  • Hoosierdaddy
    Hoosierdaddy Member Posts: 16
    #28
    HIFU trial
    There was a trial at Indiana University - Simon Cancer Center led by Dr. Michael Koch. He told me that he cancelled the trial before completion. You may wish to contact him for more information.

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