Recently diagnosed

Hello i am 59 years old and found out I have prostate cancer.It hasn't spread according to mir and bone scan but my numbers are high on gleeson ranging from 7-9. I assume this is aggressive but I failed to get prostate checked over last four years. I am confused on myriad of treatment options.My urologist wants to do a HIFU high intensity focussed ultrasound.It uses heat to kill cancer.Anyone have knowledge of this? I'm also considering robotics.

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  • I had HIFU done in May 2016 after being diagnosed. I am so happy that your urologist recommended this procedure. Last year it was not covered by insurance and my out of pocket expense was $25K but worth it. Insurance may be covering it now. My numbers were like your's and mine was aggressive but not outside my prostate. They got it all in one day as an outpatient and my PSA now is 0.2. I highly recommend it as it does not cause ED. You do loose the semen, but you still have orgasims without ejaculations. Everything else works as normal. Very glad to see doctors recommending. Good luck.

  • Sorry that you are here. If your Gleason score is nine, then it is advanced. The good news (actually great news) is that the scans were negative. I do not know that much about ultrasound, but I am concerned about its ability to take care of a G9 cancer. The positive of ultrasound is that it does not have that many side effects. If you go with surgery please know that they normally take out a couple of lymph nodes first to check for cancer. (Scans can miss small cancers.) If they find any in the lymph nodes quite often they end the operation right then and there. I discussed with my surgeon to continue with the operation even if they find cancer in my lymph nodes (which they did).

    No matter what treatment you have there may be a need for secondary treatments such as hormonal or radiation. Please know that no matter what treatment you have you can still enjoy life. While advanced cancer sucks, it does not mean you have to pull back on life. I have had surgery about 13 months ago, 38 rounds of radiation and I am still on Lupron. That said, I still go on long bike rides (>50 miles), scuba diving and long walks.

  • Your Gleason 7-9 does indeed indicate an aggressive form of prostate cancer and demands active treatment. HIFU has only recently been approved for use in the US so, unless your urologist has been performing HIFU procedures outside the US, it is unlikely he has extensive experience with this procedure, but I'm just surmising that to be the case. Whatever form of treatment you ultimately elect to pursue, my advice has always been to find the most exerienced practitioner who specializes in that form of treatment specifically for prostate cancer, i.e. hundreds, if not 1000 or more cases. All forms of treatment will have some undesired side effects regardless of the proficiency of the doctor - some immediate in the case of surgical options, some delayed in the case of radiation options. Seek out a local support group where you can talk with others who may have undergone the procedure you are favoring, but realize that we are all individuals and may respond differently to the form of treatment selected - there is no "typical" or "average" scenario with this disease. Best wishes for a successful outcome.

  • I agree with tjdillon. Finding the best doctor is the very best thing you can do to improve the odds of successful treatment.

    Personally, I am not convinced that this or that treatment is superior to all others. All of the standard treatments are able to destroy all of the cancer so long as it is confined to the prostate bed. All are capable of producing nasty side effects.

    I recommend that, in addition to the HIFU practitioner, you also meet with a surgeon and a radiation oncologist and get their opinions on your case and how they would treat it. Often, very good doctors can be found at the teaching and research hospitals, where many of the doctors are not just practitioners but scientists and teachers as well - though you do want to ask about how much of the treatment will be carried out by the top man and how much by the students. Here is a list of cancer treatment centers recommended by the U.S. National Cancer Institute: cancer.gov/research/nci-rol...

    It's hard to pick a doctor, but following your gut instincts can help. Be wary of the high pressure doctor who is in business to sell whatever procedure he likes to perform.

    Best of luck.

    Alan

  • Thank you all for your answers. I too was leaning toward robotics surgery mainly due to it being around a lot longer. I have consults this week with two very experienced surgeons in both areas.

  • Yes, I had HIFU surgery back in Oct '16. I've had no quality of life side effects such as incontinence or impotence. I'm in the US and had it done in San Francisco. It wasn't covered by insurance or Medicare so I had to go out of pocket to pay for it. The supra-pubic catheter wasn't fun to deal with but it was removed after a few weeks. I am age 67. Just make sure you find an experienced surgeon as this has only been approved by the FDA for a couple of years now.

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