Just joined your club and trying to decide on treatment

Cpmont
Cpmont Member Posts: 13
edited September 2011 in Prostate Cancer #1
I found out today I have pc. 50 yrs old psa 9.3 Gleason 6 (3 and 3) 15 cores 1 positive with less than 3 percent of tissue volume. 14 negative. T1c B0 Any pointers would be greatly appreciated.

Comments

  • nowrest
    nowrest Member Posts: 48 Member
    Welcome
    Well welcome to our little club. We will try to support you as best we can. The first thing I would say is study. Look over this site very carefully such as the resource library and community resources sections. The second thing I would mention is ask questions of doctors nurses, administrators or anyone else concerning your cancer. Keep an open mind. Come back here and we will help all we can.
  • Old-timer
    Old-timer Member Posts: 196
    No need to rush with a decision
    With those figures there is no reason to rush in making a decision. Take your time, relax, keep your spirits up, continue to enjoy life. Obviously, being diagnosed with pc is a life changing experience. Nevertheless, we can and must deal with it when it happens. It might interest you to know that I am a 20-year pc veteran, now age 85. Thus I am 35 years older than you, but I am probably no wiser!

    Good luck to you.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Anything BUT Surgery
    Don't get me started on why NOT surgery!

    I'm an outspoken opponent of it for men like you who have early stage PCa -- Gleason 6, PSA less than 10 and Stage T1c. The best thing you can do is read the following article, which sums up why you should NOT consider surgery unless ABSOLUTELY necessary:

    http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

    It's written by a physician who currently uses Hifu (high intensity frequency ultrasound) to treat PCa but has prior experience as a surgeon. FWIW, the article is not a puff piece for Hifu. It's a very candid and honest discussion of what's wrong w/surgery as an option for treating PCa, which is something very seldom seen in the literature and seldom discussed w/PCa patients.

    His opinions regarding surgery and identical to mine and if you want to some personal data about why NOT surgery -- just read the many threads posted in this forum by men who still have ED and who have to use pads years after their surgery and/or who have to wear slings or install an AUS (artificial urinary sphincter) in order to regain any form of urinary control and/or penile implants in order to have sexual intercourse again.

    There are many more alternatives available to men like you. They include but are not limited to: Cyberknife (CK which a form of SBRT - stereotactic body radiation therapy), Proton Bean Therapy (PBT), IMRT (intensity modulated radiation therapy), 3D Conformal Radiation Therapy, Low Dose and High Dose Rate Brachytherapy (LDR BT/HDR BT) and HiFu.

    Read up about them (and anything else you can find) and decide for yourself which to these methods would be best for you. Your decision also may or may not depend on the availability of insurance for the method you choose. All of the methods mentioned (except perhaps HiFu) are covered by insurers but NOT all insurers cover all of the methods. So, you'll need to do research on that too.

    Good luck!
  • JoeB13
    JoeB13 Member Posts: 1
    nowrest said:

    Welcome
    Well welcome to our little club. We will try to support you as best we can. The first thing I would say is study. Look over this site very carefully such as the resource library and community resources sections. The second thing I would mention is ask questions of doctors nurses, administrators or anyone else concerning your cancer. Keep an open mind. Come back here and we will help all we can.

    My journey to Decision: Prostate Cancer
    I recently updated my essay to include 2011 results. The information in the essay was reviewed by several doctors and presented to our Dean Ornish Prostate Cancer Support Group several years ago. It is not entirely up-to-date because several drugs hare being tested and HIFU is becoming more mainstream.

    You can find the essay at: http://home.comcast.net/~joseph.a.brennan/2011MyJourneytoDecision.pdf

    Best,

    Joe Brennan
  • robert1
    robert1 Member Posts: 82

    Anything BUT Surgery
    Don't get me started on why NOT surgery!

    I'm an outspoken opponent of it for men like you who have early stage PCa -- Gleason 6, PSA less than 10 and Stage T1c. The best thing you can do is read the following article, which sums up why you should NOT consider surgery unless ABSOLUTELY necessary:

    http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

    It's written by a physician who currently uses Hifu (high intensity frequency ultrasound) to treat PCa but has prior experience as a surgeon. FWIW, the article is not a puff piece for Hifu. It's a very candid and honest discussion of what's wrong w/surgery as an option for treating PCa, which is something very seldom seen in the literature and seldom discussed w/PCa patients.

    His opinions regarding surgery and identical to mine and if you want to some personal data about why NOT surgery -- just read the many threads posted in this forum by men who still have ED and who have to use pads years after their surgery and/or who have to wear slings or install an AUS (artificial urinary sphincter) in order to regain any form of urinary control and/or penile implants in order to have sexual intercourse again.

    There are many more alternatives available to men like you. They include but are not limited to: Cyberknife (CK which a form of SBRT - stereotactic body radiation therapy), Proton Bean Therapy (PBT), IMRT (intensity modulated radiation therapy), 3D Conformal Radiation Therapy, Low Dose and High Dose Rate Brachytherapy (LDR BT/HDR BT) and HiFu.

    Read up about them (and anything else you can find) and decide for yourself which to these methods would be best for you. Your decision also may or may not depend on the availability of insurance for the method you choose. All of the methods mentioned (except perhaps HiFu) are covered by insurers but NOT all insurers cover all of the methods. So, you'll need to do research on that too.

    Good luck!

    Complete Arsenal of Treatment Options
    While you have become a member of the club no one wants to be a member of, your "lower risk" classification is fortunate in that it allows for virtaully every treatment weapon available.

    No one here will tell you exactly what to do, as that is your decision, and each of us is different. We will tell you that you have time to research radiotherapy, surgery and watch-and-wait strategies. As you do your homework, your decision will become clear.

    One thing I think all of us will agree on...whatever your treatment option decision, make sure the individual treating you has tons of experience. The more experience they have (say 1000 surgeries or brachytherapy or radiotherapy treatments) the better your odds of skillful delivery and an excellent outcome. If you choose to do nothing....watch closely.

    You will be fine. Good luck and God Bless You.

    robert1
  • shipjim
    shipjim Member Posts: 137 Member
    robert1 said:

    Complete Arsenal of Treatment Options
    While you have become a member of the club no one wants to be a member of, your "lower risk" classification is fortunate in that it allows for virtaully every treatment weapon available.

    No one here will tell you exactly what to do, as that is your decision, and each of us is different. We will tell you that you have time to research radiotherapy, surgery and watch-and-wait strategies. As you do your homework, your decision will become clear.

    One thing I think all of us will agree on...whatever your treatment option decision, make sure the individual treating you has tons of experience. The more experience they have (say 1000 surgeries or brachytherapy or radiotherapy treatments) the better your odds of skillful delivery and an excellent outcome. If you choose to do nothing....watch closely.

    You will be fine. Good luck and God Bless You.

    robert1

    Options
    There's lots of choices. Ultimately, you have to decide what feels best for you. None are perfect. Having watched my father in the 1960's agonize with this disease, when it was my turn, I learned about robotics and didn't look back I simply wanted it out. I was T2,3+3 and had 1 of 12 cores forgot the psa.
    Had the robot, while I have sensation I don't have erections. I wear pads for sneezes etc I leak more when I drink wine but not beer, go figure.

    It's been over 5 years, PSA less than .01, I can do everything I want (with one exception) I'm 65 and life goes on. While sex is/was great, I've learned life goes on besides at my age it was more of a dream than fact.

    I spend my time doing what my wife and I want,jeeping, travelling, fly fishing and playing with grand kids.
    For me the key was not agonizing but deciding and moving on there's much to life yet to do. jj
  • Dale B
    Dale B Member Posts: 2
    PC
    You may want to contact a Dr. Kenneth Pienta of University of Michigan, Ann Arbor. Dr. Pienta only treats PC and does exclusive research on PC. I understand there are only about 10 doctors in the world that specialize like he does.

    Another prominent name in PC is Dr. Alvaro Martinez, Wm Beaumont Hospital, Royal Oak MI. He has pioneered High Dose Radiation and travels the world teaching his protocol.

    I have used both doctors and was diagnosed in June 2007, Four years late I am still PSA unmeasurable. Diagnosis, Gleasopn 9, PSA 8.8, T2B. I took High Dose Radiation, Hormone therapy and 4 months chemotherapy.
  • Cpmont
    Cpmont Member Posts: 13
    Update
    I thought I would give you guy's an update. Almost 6 months since diagnosed. I decided to wait on treatment for a while, so far so good. I chose to try the dietary approach and measure my progress. My urologist has strongly recommended against this approach but it is my decision. I got a second opinion and had a full round of test to see if the cancer had spread. The second opinion confirmed the initial diagnoses and the test confirmed the cancer is confined to the prostate. I had a blood test at 3 months and found my psa had been reduced from 9.3 to 5.4, my other numbers chlorestrol and triglycerides went from very high to normal. I also dropped approximately 30 lbs. Not really necessary just a side benefit. I am now back to my high school weight and have had to start wearing my teenage sons (4 boys) pants, not ready to purchase new wardrobe just yet.
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    Cpmont said:

    Update
    I thought I would give you guy's an update. Almost 6 months since diagnosed. I decided to wait on treatment for a while, so far so good. I chose to try the dietary approach and measure my progress. My urologist has strongly recommended against this approach but it is my decision. I got a second opinion and had a full round of test to see if the cancer had spread. The second opinion confirmed the initial diagnoses and the test confirmed the cancer is confined to the prostate. I had a blood test at 3 months and found my psa had been reduced from 9.3 to 5.4, my other numbers chlorestrol and triglycerides went from very high to normal. I also dropped approximately 30 lbs. Not really necessary just a side benefit. I am now back to my high school weight and have had to start wearing my teenage sons (4 boys) pants, not ready to purchase new wardrobe just yet.

    Right approach
    You have taken exactly the approach proper to your diagnosis.
    I dislike having to say this: Your urologist is out of touch with reality.
    Active surveillance for someone with your biopsy characteristics is the only reasonable approach. Monitoring is always amenable to changing conditions. Treatment is forever. Your biopsy showed the very least possible disease, and your psa has dropped 40% since then. How can the good doctor justify his position? Thank you for your story and continuing good luck with your choice, brave in the face of opposition. I salute you.