Just Diagnosis

Franks446
Franks446 Member Posts: 3
edited March 2014 in Prostate Cancer #1
I am 71 years old, and I was diagnos with Prostate Cancer a little over a week ago. My family Doctor found my PSA to be high and sent me to an Urologist. He put me on antibotics for 30 days to see if it was infection. When he did another PSA it was still high. I then had a biopsy and when it came back he said it was cancer on both sides. On a scale of 1 - 10 it was a 7. i go tomorrow for a bone scan and a MRI. I go back to him on Monday to find out the results. i have never been told any of my numbers or any thing else.It worrows me because I have no idea what is going on. What do I do next?
Frank Stoll

Comments

  • whubbs
    whubbs Member Posts: 77
    #2
    Cyberknife
    Frank
    Sorry to cut and paste my other reply, but yours is similar to another gentleman who posted this week:

    Welcome to an awesome group of people here, you definitely are among friends and you'll be surprised by the amount of information buried inside all of these posts, take some time and search around.
    During my investigative process I came across Cyberknife (http://www.accuray.com/)radiation treatment. It's an amazing new treatment that robotically locates thin beams of radiation using MRI imaging of the tumor in relationship to tiny gold implants.
    Insurance may not cover, but worth the look.

    I chose robotic prostatectomy due to my young age (42) and concern of erectile and urinary complications associated with all other treatments.
    Oncological results are similar with robotic, if organ confined. Mine was organ confined.
    If not organ confined, radiation type therapy essentially is the gold standard, but will damage nerves associated with erectile function, and bladder tissue associated with incontinence.

    It seems that Cyberknife is the most accurate and least damaging of radiation treatments, as opposed to 'seeding', which puts many small doses right in the prostate that emanates outward, which damages the nerves, bladder and sometimes the rectum.
    I would suggest looking into this procedure, it is very compelling.

    Please ask as many questions as you can, and let us know how you are, what your learning and how we can help.
    All the best.
    Wayne
  • BDJC
    BDJC Member Posts: 9
    #3
    Frank, first of all, you're
    Frank, first of all, you're doing the right thing by seeking out information online. As you learn more, you'll find that there are only two procedures that have a long-term track record of curing prostate cancer - radical prostatectomy (whether it be a traditional open or a Da Vinci robotic radical prostatectomy), and a procedure called ProstRcision, which is a combination of brachytherapy followed by external beam treatment. Don't be fooled by the hype of the Da Vinci robotic radical - studies have shown that the robotic radical procedure itself does not improve cure rates, rather the most important factor is the skill of the individual physician, not the equipment they use.

    I recommend you google both "Da Vinci radical prostatectomy" and "ProstRcision" to learn more about both of these treatment options. Your goal is to be cured of your prostate cancer, and make sure any doc you speak with defines cure as PSA 0.2 ng/ml 10 years after treatment. Seek out second and third opinions and learn as much as you can about all the treatment options available to you. Don't be afraid to ask tough questions of physicians with whom you consult. Start with these:

    1. How many men with prostate cancer have you personally treated?

    2. Do you track the results of all the men you have treated in a database?

    3. How many of these men have PSA 0.2 ng/ml 10 years after treatment?

    4. If you were to treat my particular case of prostate cancer, what is my 10-year Individual Cure Rate?

    The Individual Cure Rate is a calculation of the percentage of men a physician has treated, who had similar pre-treatment characteristics as yours, that achieved PSA 0.2 ng/ml 10 years after treatment. If a physician can't provide you with that information then he is just guessing as to how well he treats prostate cancer.

    Best of luck to you.
  • BDJC
    BDJC Member Posts: 9
    #4
    whubbs said:

    Cyberknife
    Frank
    Sorry to cut and paste my other reply, but yours is similar to another gentleman who posted this week:

    Welcome to an awesome group of people here, you definitely are among friends and you'll be surprised by the amount of information buried inside all of these posts, take some time and search around.
    During my investigative process I came across Cyberknife (http://www.accuray.com/)radiation treatment. It's an amazing new treatment that robotically locates thin beams of radiation using MRI imaging of the tumor in relationship to tiny gold implants.
    Insurance may not cover, but worth the look.

    I chose robotic prostatectomy due to my young age (42) and concern of erectile and urinary complications associated with all other treatments.
    Oncological results are similar with robotic, if organ confined. Mine was organ confined.
    If not organ confined, radiation type therapy essentially is the gold standard, but will damage nerves associated with erectile function, and bladder tissue associated with incontinence.

    It seems that Cyberknife is the most accurate and least damaging of radiation treatments, as opposed to 'seeding', which puts many small doses right in the prostate that emanates outward, which damages the nerves, bladder and sometimes the rectum.
    I would suggest looking into this procedure, it is very compelling.

    Please ask as many questions as you can, and let us know how you are, what your learning and how we can help.
    All the best.
    Wayne

    There are no studies
    There are no studies demonstrating long-term success of cure with Cyberknife. Cyberknife is considered to be unproven and experimental at this point.

    You can read more about comparative cure rates here: http://www.prostrcision.com/qa/
  • Franks446
    Franks446 Member Posts: 3
    #5
    BDJC said:

    Frank, first of all, you're
    Frank, first of all, you're doing the right thing by seeking out information online. As you learn more, you'll find that there are only two procedures that have a long-term track record of curing prostate cancer - radical prostatectomy (whether it be a traditional open or a Da Vinci robotic radical prostatectomy), and a procedure called ProstRcision, which is a combination of brachytherapy followed by external beam treatment. Don't be fooled by the hype of the Da Vinci robotic radical - studies have shown that the robotic radical procedure itself does not improve cure rates, rather the most important factor is the skill of the individual physician, not the equipment they use.

    I recommend you google both "Da Vinci radical prostatectomy" and "ProstRcision" to learn more about both of these treatment options. Your goal is to be cured of your prostate cancer, and make sure any doc you speak with defines cure as PSA 0.2 ng/ml 10 years after treatment. Seek out second and third opinions and learn as much as you can about all the treatment options available to you. Don't be afraid to ask tough questions of physicians with whom you consult. Start with these:

    1. How many men with prostate cancer have you personally treated?

    2. Do you track the results of all the men you have treated in a database?

    3. How many of these men have PSA 0.2 ng/ml 10 years after treatment?

    4. If you were to treat my particular case of prostate cancer, what is my 10-year Individual Cure Rate?

    The Individual Cure Rate is a calculation of the percentage of men a physician has treated, who had similar pre-treatment characteristics as yours, that achieved PSA 0.2 ng/ml 10 years after treatment. If a physician can't provide you with that information then he is just guessing as to how well he treats prostate cancer.

    Best of luck to you.

    Thanks for the info.
    Thanks for the info. I had my boan scan and CT today and i will
    find out more Monday. Frank Stoll
  • Olee
    Olee Member Posts: 97
    #6
    Franks446 said:

    Thanks for the info.
    Thanks for the info. I had my boan scan and CT today and i will
    find out more Monday. Frank Stoll

    Your Diagnosis
    Frank, I say this alot to men who come here, but you are in like company who understand. Everyone here is sincere when they say they are sorry or understand, because they are a survivor and trust me, some of the toughest and caring men you will ever meet. I was diagnosed in November and will have robotic surgery this Thursday. The whole process of research involved the internet,talking with survivors and doctors. To tell you the truth, the info I picked up from the men on here along with info gathered online was what I took with me to my appointments and posed them to my doctors. The internet can be confusing as well as some of the advice from survivors, in that there are so many different treatments that fit different situations, that is my opinion. There's alot of information to absorb and sort out, the important part is to do what's best for Frank. My best wishes to you.
  • Franks446
    Franks446 Member Posts: 3
    #7
    Olee said:

    Your Diagnosis
    Frank, I say this alot to men who come here, but you are in like company who understand. Everyone here is sincere when they say they are sorry or understand, because they are a survivor and trust me, some of the toughest and caring men you will ever meet. I was diagnosed in November and will have robotic surgery this Thursday. The whole process of research involved the internet,talking with survivors and doctors. To tell you the truth, the info I picked up from the men on here along with info gathered online was what I took with me to my appointments and posed them to my doctors. The internet can be confusing as well as some of the advice from survivors, in that there are so many different treatments that fit different situations, that is my opinion. There's alot of information to absorb and sort out, the important part is to do what's best for Frank. My best wishes to you.

    My Diagnosis
    Olee
    thanks for the info. I have a lot to absorb and I am trying to get it all in my head. I have a friend that went through this in November and he told me "keep the faith and stay postive".
    I go back to the Dr. in the morning and maby I can find out what he wants to do then I have to make the discision if that is what I feel is best for me. Frank
  • Judge
    Judge Member Posts: 10
    #8
    Just diagnosed....
    I am 58 and diagnosed on Friday with a total Gleason score of 7 and a PSA of 16. It rose from 13 just weeks before and 3.7 a year ago. The local urologist wants to perform IMRT. I am trying to get in for a second opinion at MD Anderson in Houston.

    My Blue Cross Blue Shield policy has "excluded" anything urological as, at the time of my policy application, my PSA was 4.1, and even with a negative byopsy, they excluded urology. Now, years later, they win...I lose. Are there options for financial assistance for treatment?

    Does anyone have experience investigating or being treated in less expensive, more health care-oriented countries?

    I also find dizzying the number of websites and information as I read about prostate cancer. Are there some sites better than others?

    Brothers in anxiety,

    Judge
  • shipjim
    shipjim Member Posts: 137 Member
    #9
    Judge said:

    Just diagnosed....
    I am 58 and diagnosed on Friday with a total Gleason score of 7 and a PSA of 16. It rose from 13 just weeks before and 3.7 a year ago. The local urologist wants to perform IMRT. I am trying to get in for a second opinion at MD Anderson in Houston.

    My Blue Cross Blue Shield policy has "excluded" anything urological as, at the time of my policy application, my PSA was 4.1, and even with a negative byopsy, they excluded urology. Now, years later, they win...I lose. Are there options for financial assistance for treatment?

    Does anyone have experience investigating or being treated in less expensive, more health care-oriented countries?

    I also find dizzying the number of websites and information as I read about prostate cancer. Are there some sites better than others?

    Brothers in anxiety,

    Judge

    Just diagnosed
    Talk to MDA about hardship help. My son got it at Hermann SW. Many hospitals have assistance. The other choice would be to visit Ben Taub.
    I don't know of any inexpensive options. Probably the cost of going overseas would balance out local treatment.
    This is a good site to work with as we all have been through it. The 3 main options are radiology and chemo, seeds and surgery. At your age if you can, get the surgery. Da Vinci robotics is the most popular one now and seems to be least invasive with the best and fastest recovery.
    Hermann, St Luke's, Anderson, Methodist and even some of the clinicians such as Northwoods in Woodlands-Conroe offer it.
    Keep in touch, if you can't get into MDA quickly, go somewhere else in this instance, they aren't necessarily the only or best place to. Prostate cancer is fairly common and regularily treated as you can see here.
    Stay in touch so all of us can work with you. jj
  • shipjim
    shipjim Member Posts: 137 Member
    #10
    BDJC said:

    Frank, first of all, you're
    Frank, first of all, you're doing the right thing by seeking out information online. As you learn more, you'll find that there are only two procedures that have a long-term track record of curing prostate cancer - radical prostatectomy (whether it be a traditional open or a Da Vinci robotic radical prostatectomy), and a procedure called ProstRcision, which is a combination of brachytherapy followed by external beam treatment. Don't be fooled by the hype of the Da Vinci robotic radical - studies have shown that the robotic radical procedure itself does not improve cure rates, rather the most important factor is the skill of the individual physician, not the equipment they use.

    I recommend you google both "Da Vinci radical prostatectomy" and "ProstRcision" to learn more about both of these treatment options. Your goal is to be cured of your prostate cancer, and make sure any doc you speak with defines cure as PSA 0.2 ng/ml 10 years after treatment. Seek out second and third opinions and learn as much as you can about all the treatment options available to you. Don't be afraid to ask tough questions of physicians with whom you consult. Start with these:

    1. How many men with prostate cancer have you personally treated?

    2. Do you track the results of all the men you have treated in a database?

    3. How many of these men have PSA 0.2 ng/ml 10 years after treatment?

    4. If you were to treat my particular case of prostate cancer, what is my 10-year Individual Cure Rate?

    The Individual Cure Rate is a calculation of the percentage of men a physician has treated, who had similar pre-treatment characteristics as yours, that achieved PSA 0.2 ng/ml 10 years after treatment. If a physician can't provide you with that information then he is just guessing as to how well he treats prostate cancer.

    Best of luck to you.

    Da Vinci
    I don't believe you'll get a 10 year rating on this surgery as it's not that old, trials were ended early due to the overwhelming sucess rate. Seeds have been around in general use about 14 yrs so that will be the extent of their reports but they seem popular for people over 70 as is hormone treatment.
    Keep us all posted. jj
  • Judge
    Judge Member Posts: 10
    #11
    shipjim said:

    Just diagnosed
    Talk to MDA about hardship help. My son got it at Hermann SW. Many hospitals have assistance. The other choice would be to visit Ben Taub.
    I don't know of any inexpensive options. Probably the cost of going overseas would balance out local treatment.
    This is a good site to work with as we all have been through it. The 3 main options are radiology and chemo, seeds and surgery. At your age if you can, get the surgery. Da Vinci robotics is the most popular one now and seems to be least invasive with the best and fastest recovery.
    Hermann, St Luke's, Anderson, Methodist and even some of the clinicians such as Northwoods in Woodlands-Conroe offer it.
    Keep in touch, if you can't get into MDA quickly, go somewhere else in this instance, they aren't necessarily the only or best place to. Prostate cancer is fairly common and regularily treated as you can see here.
    Stay in touch so all of us can work with you. jj

    Just diagnosed
    Thank you, Shipjim. Do you know if DaVinci robotics is the same procedure as something called IMRT or Intensity Modulated Radiation Therapy? So far, the local urologist, who did the byopsy, wants to do this procedure.

    What have you found as the best websites from which to gather valid information about the choices?

    It's certainly good to have "friends" who can share these challenges.

    Jay

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