gleason score of 9

1246

Comments

  • rede2fite
    rede2fite Member Posts: 1
    My score I
    I have a score of 9 and a PSA of 4.38 and my Dr. Says all hell is going to break loose. We're talking pre-radiation, surgery, and hormone shots. DOES THAT SEEM RIGHT?
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    rede2fite said:

    My score I
    I have a score of 9 and a PSA of 4.38 and my Dr. Says all hell is going to break loose. We're talking pre-radiation, surgery, and hormone shots. DOES THAT SEEM RIGHT?

    Your score
    Rede2fite

    The protocol recommended by your doctor does exist but it requires a delicate surgery post radiation. Risk of fistula and a series of side effects may follow, and it is difficult to find doctors to do the “repair” work later if things go wrong.
    Get assurances for aftercare services before committing.

    Gleason 9 patients have a series of treatments (solo or combinations). However, other info related to each case is required to decide on the best approach. Your clinical stage, biopsy results, age, other health problems, etc., will be important for a final decision.

    Welcome to the board.
    VGama
  • mrspjd
    mrspjd Member Posts: 694 Member
    rede2fite said:

    My score I
    I have a score of 9 and a PSA of 4.38 and my Dr. Says all hell is going to break loose. We're talking pre-radiation, surgery, and hormone shots. DOES THAT SEEM RIGHT?

    obtain multiple opinions from many PCa specialists
    rede,

    You seem to understand the seriousness of your diagnosis but, IMHO, any doctor who advises "AHIGBL" is unprofessional and doing you a dis-service. In a timely manner, please seek many (2nd, 3rd) opinions from OTHER PCa specialists BEFORE you agree to any PCa treatment. If at all possible, try to locate & consult with experienced and skilled radiation oncologists, urologic surgeons, and especially, an oncologist who specializes in treating PCa patients (and whose speciality is not surgery, urology, or radiation). Be prepared for your appts by bringing along any and all copies of your test reports such as your biopsy report, bone scan, CT scan, MRI or E-MRI, etc.

    I like your attitude...ready to fight! Fight on! Good luck.
  • TitusvilleBills
    TitusvilleBills Member Posts: 23
    mrspjd said:

    obtain multiple opinions from many PCa specialists
    rede,

    You seem to understand the seriousness of your diagnosis but, IMHO, any doctor who advises "AHIGBL" is unprofessional and doing you a dis-service. In a timely manner, please seek many (2nd, 3rd) opinions from OTHER PCa specialists BEFORE you agree to any PCa treatment. If at all possible, try to locate & consult with experienced and skilled radiation oncologists, urologic surgeons, and especially, an oncologist who specializes in treating PCa patients (and whose speciality is not surgery, urology, or radiation). Be prepared for your appts by bringing along any and all copies of your test reports such as your biopsy report, bone scan, CT scan, MRI or E-MRI, etc.

    I like your attitude...ready to fight! Fight on! Good luck.

    PSA 110, Gleason =7 (4+3)
    I only found out on October 13th that I have prostate cancer. I am going through the "hurry up & wait" phase of various doctor appointments as we decide on a treatment plan. My urologist is recommeding surgery with the Da Vinci robot by Dr Vip Patel (Celebration Fl), but is not being pushy at all about this. He simply stated that most urologists would recommend removal since I was 47 years old.

    I spoke briefly with Space Coast Radiology, and they would not give me a recommendation on treatment. Said possibly may need a combo of surgery & radiation. I am visiting Moffitt Cancer Center this Thursday (11/3) to discuss options, and meet with Dr Patel about robotic surgery. Of course, my preference is to start something. I am not familar with some of the "lingo", what is a PCa, and what is AHIGBL?

    I am trying to learn as much as possible so that I am able to make an educated decision. I have read some white papers on Prostate Cancer from Hopkins, and I have a pretty good book "Winning the Battle Against Prostate Cancer" by Dr Gerald Chodak. I was hoping that anyone that has been done this path already might share with me some questions that I should be asking my doctors prior to making a decision. I have also met with numerous men that have gone through various treatments. Anyone have a recommendation on the "Triple Prong Approach" (seeds, external radiation and hormone therapy).

    Appreciate any advice
    Thank you
    Jim
  • hunter49
    hunter49 Member Posts: 210

    PSA 110, Gleason =7 (4+3)
    I only found out on October 13th that I have prostate cancer. I am going through the "hurry up & wait" phase of various doctor appointments as we decide on a treatment plan. My urologist is recommeding surgery with the Da Vinci robot by Dr Vip Patel (Celebration Fl), but is not being pushy at all about this. He simply stated that most urologists would recommend removal since I was 47 years old.

    I spoke briefly with Space Coast Radiology, and they would not give me a recommendation on treatment. Said possibly may need a combo of surgery & radiation. I am visiting Moffitt Cancer Center this Thursday (11/3) to discuss options, and meet with Dr Patel about robotic surgery. Of course, my preference is to start something. I am not familar with some of the "lingo", what is a PCa, and what is AHIGBL?

    I am trying to learn as much as possible so that I am able to make an educated decision. I have read some white papers on Prostate Cancer from Hopkins, and I have a pretty good book "Winning the Battle Against Prostate Cancer" by Dr Gerald Chodak. I was hoping that anyone that has been done this path already might share with me some questions that I should be asking my doctors prior to making a decision. I have also met with numerous men that have gone through various treatments. Anyone have a recommendation on the "Triple Prong Approach" (seeds, external radiation and hormone therapy).

    Appreciate any advice
    Thank you
    Jim

    Sorry to hear about your
    Sorry to hear about your diagnosis. You have an aggressive disease by your numbers and I would guess there is a good chance it broke throught the wall of the prostate. That being said I would feel surgery is not the best options. Johns Hopkins has a diagnostic clinic they do every other week. You can go there they examine you and your pathology report. Then some of the top doctors discuss your stage and best course of treatment. They are excellent.This program will give you a great amount of good information. I would absolutely go there and probably get treated there as well. If your interested let me know I will send you contact information. Good luck you will do fine with the proper treatment. Stay calm and focus on today as tomorrow is waiting already.
  • TitusvilleBills
    TitusvilleBills Member Posts: 23
    hunter49 said:

    Sorry to hear about your
    Sorry to hear about your diagnosis. You have an aggressive disease by your numbers and I would guess there is a good chance it broke throught the wall of the prostate. That being said I would feel surgery is not the best options. Johns Hopkins has a diagnostic clinic they do every other week. You can go there they examine you and your pathology report. Then some of the top doctors discuss your stage and best course of treatment. They are excellent.This program will give you a great amount of good information. I would absolutely go there and probably get treated there as well. If your interested let me know I will send you contact information. Good luck you will do fine with the proper treatment. Stay calm and focus on today as tomorrow is waiting already.

    Thank you. I would greatly
    Thank you. I would greatly appreciate the information.
  • hunter49
    hunter49 Member Posts: 210

    Thank you. I would greatly
    Thank you. I would greatly appreciate the information.

    Hopkins
    The number to call is the scheduling center 410 502 8000. It was great for me. i was on the fence about what treatment to proceed with. I met with 3 of the top people in the world including Alan Partin who developed the Partin table for the disease spreading reoccurring etc. My slides were reviewed by one of the top pathaologists in the country and they all met to advise me on the course of treatment. Good luck let me know how it goes.
    Doug R.
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    hunter49 said:

    Hopkins
    The number to call is the scheduling center 410 502 8000. It was great for me. i was on the fence about what treatment to proceed with. I met with 3 of the top people in the world including Alan Partin who developed the Partin table for the disease spreading reoccurring etc. My slides were reviewed by one of the top pathaologists in the country and they all met to advise me on the course of treatment. Good luck let me know how it goes.
    Doug R.

    Hunter; Hopkins
    Doug
    Your advice to Jim is excellent. I also think that JH is probably the best place to get a second opinion on his case. Surely they are biased through surgery to a certain extent but they would not recommend surgery if such case would not have a good chance into cure.
    JH do not accept patients for surgery if there is an apparent possibility for failure. They “greatly value” their reputation in successes.
    The problem falls with the side effects. How far can one accept to be cured but confront a possible permanent “defect”?
    This is a tough decision and the answer can be found only in one self’s willingness and the family.
    I hope you and Jim find that answer. I found it at my time.

    Regards.
    VG
  • hunter49
    hunter49 Member Posts: 210

    Hunter; Hopkins
    Doug
    Your advice to Jim is excellent. I also think that JH is probably the best place to get a second opinion on his case. Surely they are biased through surgery to a certain extent but they would not recommend surgery if such case would not have a good chance into cure.
    JH do not accept patients for surgery if there is an apparent possibility for failure. They “greatly value” their reputation in successes.
    The problem falls with the side effects. How far can one accept to be cured but confront a possible permanent “defect”?
    This is a tough decision and the answer can be found only in one self’s willingness and the family.
    I hope you and Jim find that answer. I found it at my time.

    Regards.
    VG

    Hopkins
    Hey VG.
    Thank you for the support of my post. You actually made me feel good about my outcome at JH as all the doctors said surgery for me. However, there were 5 others in the MDC and 2 were recomended a watch and wait and 3 radiation. They were very analytical about wht they did.One of the men who they suggested radiation was 58 and had a 4+4. It was really a great experience especially if you were not well informed about the disease. Hope you are doing well. Keep fighting and kick its ****. Good luck.
    Doug
    ps no idea why this came out red
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    hunter49 said:

    Hopkins
    Hey VG.
    Thank you for the support of my post. You actually made me feel good about my outcome at JH as all the doctors said surgery for me. However, there were 5 others in the MDC and 2 were recomended a watch and wait and 3 radiation. They were very analytical about wht they did.One of the men who they suggested radiation was 58 and had a 4+4. It was really a great experience especially if you were not well informed about the disease. Hope you are doing well. Keep fighting and kick its ****. Good luck.
    Doug
    ps no idea why this came out red

    Hunter; PS ?
    Doug

    What does your PS (no idea why this came out red) mean?

    VG
  • hunter49
    hunter49 Member Posts: 210

    Hunter; PS ?
    Doug

    What does your PS (no idea why this came out red) mean?

    VG

    when I typed a thank u to u
    when I typed a thank u to u it was showing up red thought you would see it that way when posted no biggie. Scheduled surgery fro next Thursday. Every doctor recomended it including 3 radiologists. oh well here goes
  • mrspjd
    mrspjd Member Posts: 694 Member
    hunter49 said:

    when I typed a thank u to u
    when I typed a thank u to u it was showing up red thought you would see it that way when posted no biggie. Scheduled surgery fro next Thursday. Every doctor recomended it including 3 radiologists. oh well here goes

    Doug,
    Congrats on making a tx decision. Sending best wishes for a speedy and full recovery next week.

    mrs pjd
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    mrspjd said:

    Doug,
    Congrats on making a tx decision. Sending best wishes for a speedy and full recovery next week.

    mrs pjd

    Hunter; Happy for the News
    Doug

    I am sorry but could not interpret well your “telepathic wireless” communication. I am from a non English speaking country so that my vocabulary is limited. With the help of Mrs PJD, I am taking it as your decision for surgery. You shouldn’t be apprehended with what others in this boat think on your choice for a treatment. We all work hard to get to that decisiveness and once satisfied; SURELY our decision is the best. Be confident.

    I want to congratulate you and hope it will “terminate” this harsh passage in you and your family’s life.

    You can count on our support in your journey ahead. Please let us know more about happenings.

    Wishing you the best.
    VGama
  • hunter49
    hunter49 Member Posts: 210

    Hunter; Happy for the News
    Doug

    I am sorry but could not interpret well your “telepathic wireless” communication. I am from a non English speaking country so that my vocabulary is limited. With the help of Mrs PJD, I am taking it as your decision for surgery. You shouldn’t be apprehended with what others in this boat think on your choice for a treatment. We all work hard to get to that decisiveness and once satisfied; SURELY our decision is the best. Be confident.

    I want to congratulate you and hope it will “terminate” this harsh passage in you and your family’s life.

    You can count on our support in your journey ahead. Please let us know more about happenings.

    Wishing you the best.
    VGama

    Thank you. BTW, Your
    Thank you. BTW, Your English us fine. Will keep you posted
  • tspoon
    tspoon Member Posts: 24

    Tspoon; We are Happy to have found you too
    Tspoon

    You are wonderful. Your post shows me how helpful can we be as comrades in this boat, sharing information.
    I sincerely hope that you are well and have gone through that operation. It is so nice to read about your successful remission in the prostate cancer.
    Xgeva (denosumab) may be the “culprit” for the “cleaning” of cancer at bone marrow. It is one of the newer drugs designed to act on identified targets (markers) which are the results from DNA studies on the cancer.
    You surely will do your 70s and 80s and …... All those plans will be accomplished.

    I wish you a continuous success in your treatment.
    VGama

    Feling good.
    My psa @last check was .05, originally 1913, all my numbers are in the normal ranges. I am healthy, for a stage 4 pc patient. I had the carpal tunnel surgery on both hands at once and I feel great. Sure I hurt sometimes, after all I have 3 vertabrae ready to collapse from the cancer damage on my spine. I am happy with my choices, and always at the back of my head is the cancer is waiting for it's chance to start again. HT has it's own set of sideaffects, but I would recommend it, sometimes I find myself sooo emotional with all that has happened since this started. I feel blessed to have such a great support system in my wife, and family. Thank you all for your encouraging comments, ideas, suggestions. and information. 8 months ago it felt so hopeless and I felt helpless. Armed with information that is no longer the case. I continue to watch this blog, and wish everyone good health.
  • tspoon
    tspoon Member Posts: 24
    BERTB said:

    Congratulations!
    Yes tspoon, this is a great site. I'm 61 and also G-9 with a PSA of 5.2 when dx'ed in April of this year. I'm just starting this journey and hoping for results like yours. Another great site I found is HealingWell.com. There are many men with high G's there also.
    Good luck and I hope you continued success.

    thank you for the info on
    thank you for the info on this website, there is no such thing as too much info I am finding. Next psa blood work next week, anticipating tje same .05 as last tests. Acid level at last ck was 76, i feel great and hope you are well as well.
  • tonahawk899
    tonahawk899 Member Posts: 9
    To the Rake
    I'm 63, robotic prostatectomy on May 21,2010, similar symptoms and treatments, I'm 20 months out with still less than 0.08 Psa, although climbing a little over the last 3 months, will have another Psa test and testosterone around February 19, hoping for the best, I also had Adjuvant therapy, Casodex and Lupron for 4 months, followed by 34 sessions on IMRT. The **** got one of my SV. I'm still pretty active, hunt, fish, walk, shovel a hell of a lot of snow(Park City, Utah), life is great with every day a blessing from God, take some supplements, eat a lot of wild game, red wine, green tea, etc, write me at [email protected] for further information, God Bless all of you on this forum, sincerely, my prayers and thoughts are with everyone of you everyday, the only ones who understand how this really affects your life are you guys, Tony
  • VascodaGama
    VascodaGama Member Posts: 3,491 Member

    To the Rake
    I'm 63, robotic prostatectomy on May 21,2010, similar symptoms and treatments, I'm 20 months out with still less than 0.08 Psa, although climbing a little over the last 3 months, will have another Psa test and testosterone around February 19, hoping for the best, I also had Adjuvant therapy, Casodex and Lupron for 4 months, followed by 34 sessions on IMRT. The **** got one of my SV. I'm still pretty active, hunt, fish, walk, shovel a hell of a lot of snow(Park City, Utah), life is great with every day a blessing from God, take some supplements, eat a lot of wild game, red wine, green tea, etc, write me at [email protected] for further information, God Bless all of you on this forum, sincerely, my prayers and thoughts are with everyone of you everyday, the only ones who understand how this really affects your life are you guys, Tony

    Jealous for your “Pretty” activity
    Tony, I am thinking of you too. The "climing" to 0.08 may mean nothing. Hope for negatives in February.

    VG
  • Mikes2990
    Mikes2990 Member Posts: 6

    To the Rake
    I'm 63, robotic prostatectomy on May 21,2010, similar symptoms and treatments, I'm 20 months out with still less than 0.08 Psa, although climbing a little over the last 3 months, will have another Psa test and testosterone around February 19, hoping for the best, I also had Adjuvant therapy, Casodex and Lupron for 4 months, followed by 34 sessions on IMRT. The **** got one of my SV. I'm still pretty active, hunt, fish, walk, shovel a hell of a lot of snow(Park City, Utah), life is great with every day a blessing from God, take some supplements, eat a lot of wild game, red wine, green tea, etc, write me at [email protected] for further information, God Bless all of you on this forum, sincerely, my prayers and thoughts are with everyone of you everyday, the only ones who understand how this really affects your life are you guys, Tony

    Dear Rake-
    I'm 54 and in the last year I have been in very much your situation. Gleason 5+4, 13/13 samples positive in biopsy, bone scan clean. I started hormone therapy immediately. I had a davinci radical prostatectomy, the margins were dirty and one of my lymph nodes had metastasized. T3N1 I went to an oncologist, Dr Moskowitz in Naples Florida, who gave me 6 doses of chemo, on the very probable assumption that micrometastases had already occured and this was my best chance to cure rather than palliate. After the chemo, which is very tough stuff, every bit as nasty as people say, I has 40 doses of radiation. I have exhausted every known treatment. They cannot be done a second time.

    Right now, cancer is undetectable, if it stays that way I might live to be 100, if it recurs, I've got about a year. The best I can suggest to you my friend, is that you hit back at this awful disease as hard as you can as soon as you can. You have everything to gain and lose, so be maximally aggressive.

    I know how much the disease AND the treatment mess with your mind. Everybody breaks down once in a while but you have to stay strong for yourself and those who love you. Get right with God. Stay tough and fight back, learn to appreciate how much you have been given and remind yourself how much there is in your life that is worth fighting for. I know what a gut check this is. Good luck and God bless.

    Mike

    BTW, I have gotten some solace from this, maybe you will too:
  • j22411
    j22411 Member Posts: 8
    2ndBase said:

    Same Gleason
    Mine was 9, had already spread and was told surgery was not an option. Had one Lupron shot and 40 radiation treatments. I was 52 then and am 59 today after being given maybe 2 years to live. I go the stress out of my life and know that is a major reason for my long survival. My psa was 24 when dx and is now well over 100 but I do not worry about it and see no long term benefit from further treatment as I choose a better quality of life over the side effects of treatment at this point. If your cancer has already spread then you need to think about quality of life alot because there are many side effects to any treatment. Do not stress about it and all the best to you.

    Erroneous post.

    Erroneous post.