Need Some Info

mykinak
mykinak Member Posts: 3
edited March 2014 in Prostate Cancer #1
I've recently been diagnosed, July 16th, with Prostate Cancer. My Urologist gave me some literature to read and scheduled a follow up to discuss treatment options. The first choice, obviously, was surgery. I have a GS of 7(3+4), my PSA on June 3rd was 4.1 and staged at T1c, with my CT and bone scans coming back normal. I'm 53 years old and the only surgery I've ever had was a tonsillectomy when I was 8. While I'm not too excited to have someone cutting on me it may be the best choice. I'm seeing a radiation Oncologist tomorrow to get their take on my case. What I'm looking for is a site that can provide a particular surgeon's success rates. Is there somewhere I can find this information? This whole ordeal has left me confused and sad. I need to know that the doctor performing the surgery is not only competent but has success stories to back it up. Thank you in advance for your input and assistance.

Comments

  • NM
    NM Member Posts: 214
    #2
    Welcome to the club nobody wants to join
    Hi I am in the same boat as you and have not yet chosen a doctor but have narrowed it down (ins. reasons mainly) Just pick someone experienced and interview him personally. I am 52 so you know I have major concerns about both incontinence and impotence. I went ot John Hopkins site and downloaded 7 keys to treating prostate cancer and it was a big help to me.Good luck in your decision.....Nick....Ps I am going to have the Davinci surgery as I pray it will remove all the cancer from my body. Hope i helped you a little...Nick
  • shubbysr
    shubbysr Member Posts: 87
    #3
    NM said:

    Welcome to the club nobody wants to join
    Hi I am in the same boat as you and have not yet chosen a doctor but have narrowed it down (ins. reasons mainly) Just pick someone experienced and interview him personally. I am 52 so you know I have major concerns about both incontinence and impotence. I went ot John Hopkins site and downloaded 7 keys to treating prostate cancer and it was a big help to me.Good luck in your decision.....Nick....Ps I am going to have the Davinci surgery as I pray it will remove all the cancer from my body. Hope i helped you a little...Nick

    John Hopkins is a good choice
    Hi Nick,
    Welcome to the club. I live in Aiken, South Carolina (Employment relocation from Michigan!)
    I am 55 and was diagnosed in March, did lots of research,had Robotic removal at John Hopkins with Dr. Jarow. I have nothing but great things to say about my entire experience.
    Yes,I have incontinence and impotency but, am getting better every day!
    My pathology reported that the cancer was contained to the prostate capsule with no involvement and my 1st post PSA was <0.1!!!!

    Good luck and prayers your way.

    Jim (shubbysr)
  • channelsurferdude
    channelsurferdude Member Posts: 12
    #4
    NM said:

    Welcome to the club nobody wants to join
    Hi I am in the same boat as you and have not yet chosen a doctor but have narrowed it down (ins. reasons mainly) Just pick someone experienced and interview him personally. I am 52 so you know I have major concerns about both incontinence and impotence. I went ot John Hopkins site and downloaded 7 keys to treating prostate cancer and it was a big help to me.Good luck in your decision.....Nick....Ps I am going to have the Davinci surgery as I pray it will remove all the cancer from my body. Hope i helped you a little...Nick

    Proton Beam Therapy
    NM and Mykinak,

    Please research Proton Beam Therapy. It might be a non invasive procedure that could work for you. I have seen very little on this site, but until I started researching all modalities did I realize there was procedure that works, has been done over 12,000 times at Loma Linda and has fewer side effects than other modalities. Please just check it out.
  • mykinak
    mykinak Member Posts: 3
    #5
    channelsurferdude said:

    Proton Beam Therapy
    NM and Mykinak,

    Please research Proton Beam Therapy. It might be a non invasive procedure that could work for you. I have seen very little on this site, but until I started researching all modalities did I realize there was procedure that works, has been done over 12,000 times at Loma Linda and has fewer side effects than other modalities. Please just check it out.

    Thanks
    All,

    Thanks for your input. channelsurferdude, I have a friend that knows someone who went there (Loma Linda) with very favorable results but I live in Alaska and that limits my opportunities. From what I understand they won't take you if you have a GS over 7 so I could possibly qualify but the transportation & living accomodations will send me into the "poor house". I'm still researching my options.

    NM, good luck in your search for the right doctor. I'm still trying to find out more information about the doctor I was referred to. My wife and I weren't very comfortable with his demeanor. He reminded me of a car salesman. When I told him that I didn't want surgery he had a "what do you mean you don't want surgery" look on his face. I could only wonder if all surgeons felt that way. I'm still trying to decide what to do. Good luck to you!
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #6
    you can find. You will have only one shot at it, so even if you have to go to a different geographic area, do it.

    Remember, if you have surgery, and there is still cancer; you can then pick another treatment option such as radiation. It really doesn't work the other way around.

    Consider local support groups in your area. Contact the american cancer society for information.

    We all, when diagnosed have been in a state of shock and negative feelings such as depression, etc, etc.

    Prostate cancer is very treatable, when dectected early as yours has been.

    we are with you

    Ira
  • novaguy
    novaguy Member Posts: 76
    #7
    Sorry you've joined our
    Sorry you've joined our club. I went through the same process you're going through, and had the same questions. I had robotic surgery three weeks ago and am very happy with the outcome, including the pretty fast recovery and being continent, and a finding of organ confined disease with negative margins (gleason 4+3). However, my doctor tells me I've done better than average, so don't take my case as typical. And I still await the 3-month PSA.

    About finding a surgeon, I interviewed three surgeons and one radiologist locally, and contacted three more, the famous ones, including the Henry Ford clinic and Sloan Kettering. I quickly decided on surgery vs radiation because the radioloist said that for my nunmbers, seeds alone would not be enough, he would also recommend external radiation. Your case may be different, and you may want to consider seeds.

    I had some issues with insurance at the big surgical centers, and had no assurance that their top doctors would treat me, versus being treated by one of their lesser known doctors. I decided I could get more information about the specific doctor who would treat me if I stayed local. So I asked some blunt questions, don't be afraid to ask, it's your life. I asked how many procedures they had done, how many of cases like mine, what their outcomes were in terms of positive margins and side effects, and if they could not do the surgery, I asked them who they would recommend. You will find you probably will not get direct answers to all your questions, so you need a second sense to interpret what they say, read between the lines.

    Based on literature review I decided I would not choose a surgeon with less than 260 cases. I also looked at those who had been listed under "Best Doctors,"there's a few publications that carry that. I finally chose one who had done almost 500, has one of the highest reputations in our area (Virginia), and gave me good vibes. And, as I said, he did a great job.

    Good luck with your search.

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