Sorry any of us have to be here.....

rexx
rexx Member Posts: 11
in Prostate Cancer #1
Hello all,

I have also been recently diagnosed with gleason 9 stage, stage 3a, no, mo pc. I have been getting regular screenings for the past 20 yrs, so I was surprised like most of you are when the diagnosis came back. My initial biopsy showed one core positive and the clinical grade was t1c, 4+3, which was also aggressive, but after having robot assisted surgery in January, the stellar 5+4 was really a shock. I have searched the web also and I have read many articles and blogs as well as the partin tables and the information is very daunting.
My urologist has also recommended adjuvent radiation therapy in a couple of months. I am healing nicely and the incontinence was minimal and is decreasing rapidly, which I am grateful for. I, like the rest of the group am trying to get a grip on my overall prognosis.

Rexx

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Welcome Rex
    Rex,

    Welcome to the forum and I too am sorry we have to meet like this but you have found a great spot to learn and exchange information with other men going through similar trials.

    It would be great if you could share a bit of information about yourself and how your prostate cancer progressed such as age, when you were first diagnosed and what the inital biopsy revealed, PSA history and so forth.

    Glad the effects of surgery are mending quickly. I am sure the 5+4 came as a shock but there are many options available as you know to continue to curb this disease.

    Best,

    K
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #3
    Kongo said:

    Welcome Rex
    Rex,

    Welcome to the forum and I too am sorry we have to meet like this but you have found a great spot to learn and exchange information with other men going through similar trials.

    It would be great if you could share a bit of information about yourself and how your prostate cancer progressed such as age, when you were first diagnosed and what the inital biopsy revealed, PSA history and so forth.

    Glad the effects of surgery are mending quickly. I am sure the 5+4 came as a shock but there are many options available as you know to continue to curb this disease.

    Best,

    K

    Welcome Rex
    I am with Kongo. You need to provide more info on your stats to get reliable opinions from the guys here. What is the basis for your doctors’ suggestion in advancing with adjuvant radiation therapy? Is it due to the Gleason score or was there any other matter in the path report?
    Have you done image studies? What are the bases for theN0 and M0 in your diagnosis?
    What about the PSA, what has been its chronology along the 20 years and after surgery?

    You know that you should recover completely before going through RT, to avoid “damage” to healing “parts”. Radiation should be done with targets which usually include the areas at the sphincter and at the dissection from the rectum.

    In some cases, RT may have better outcomes if done as a salvage treatment then adjuvant. I recommend you to get second opinions on the benefits and the risks as well as the side effects.

    I hope that you recover the soonest and that you find a satisfying answer for your case.

    The best.
    VGama
  • rexx
    rexx Member Posts: 11
    #4
    VascodaGama said:

    Welcome Rex
    I am with Kongo. You need to provide more info on your stats to get reliable opinions from the guys here. What is the basis for your doctors’ suggestion in advancing with adjuvant radiation therapy? Is it due to the Gleason score or was there any other matter in the path report?
    Have you done image studies? What are the bases for theN0 and M0 in your diagnosis?
    What about the PSA, what has been its chronology along the 20 years and after surgery?

    You know that you should recover completely before going through RT, to avoid “damage” to healing “parts”. Radiation should be done with targets which usually include the areas at the sphincter and at the dissection from the rectum.

    In some cases, RT may have better outcomes if done as a salvage treatment then adjuvant. I recommend you to get second opinions on the benefits and the risks as well as the side effects.

    I hope that you recover the soonest and that you find a satisfying answer for your case.

    The best.
    VGama

    Thank you Kongo and VGama for your reply to my posting.
    I am 60 yrs old. Surgery was performed January 2012. The adjuvent therapy is based on the gleason score and the extrapostatic ext., which the doc said was focal. The bladder neck, seminal vesicles, and margins were all negative. The doc said that based on two excellent studies that a pc patient with high gleason scores had better overall longterm prognosis with early adjuvent radiation after prostatectomy. The Doc also expressed to me that he wants the healing to be completed before the RT begins. In regards to my psa's over the last 20 yrs, they were all 1.0 or less through July 2009. My psa increased to 2.1 July 2010, 1.9 Dec 2010, 2.8 March 2011, and 5.1 July 2011 and then 7.1 Nov 2011 at which time we did biopsy. I chose robotic surgery with different Urologist for a number of reasons, but also because I had read that robotic was the least invasive and down time was less. I just received my first post protatectomy psa today. It came back 0.085. I will be making appt. tomorrow for next PSA and to ask the doc for addl. information.

    Once again, this does get daunting at times, but I do intend to be proactive. This a journey that none of us were prepared to make, but it does help to have guys like yourselves who are able to provide helpful information to the rest of us.

    Thanks Again

    Rexx
  • Old-timer
    Old-timer Member Posts: 196
    #5
    I send your words of encouragement
    I am 25 years your senior and my journey with prostate cancer is nearly 21 years long. I have undergone a variety of treatments, some more successful that others. Overall, it has not been so bad and life has been and continues to be very good.

    My readings were different from yours and I don't think my specific record would be useful to you.

    Sorry you must join our club. Nevertheless, I welcome you and I wish to give you a little spark of good will.

    Jerry
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #6
    Old-timer said:

    I send your words of encouragement
    I am 25 years your senior and my journey with prostate cancer is nearly 21 years long. I have undergone a variety of treatments, some more successful that others. Overall, it has not been so bad and life has been and continues to be very good.

    My readings were different from yours and I don't think my specific record would be useful to you.

    Sorry you must join our club. Nevertheless, I welcome you and I wish to give you a little spark of good will.

    Jerry

    A Layman's Opinion
    Jerry; what a wonderful way to welcome Rex. You done it so well and Rex and all of us are grateful to have you around. Thanks “old” buddy.

    Rex,

    The info you share above seems to be rightful for a choice on adjuvant RT. That is when considering the rates for possibilities at cure, although the risks are high in terms of urinary and bowel damage.
    You may also consider that ED will be highly affected which at 60 y/o may be difficult to accept.
    Here is an article on the matter from a truthful source;
    http://www.europeanurology.com/article/S1569-9056(10)00043-6/fulltext

    My opinion as a layman is that your stats are all indicative that you should not wait. However, do it timely and coordinately (cancer do not spread overnight). The Gleason 9, low velocity on PSADT and extra capsular extensions, as well as the high result of the last PSA post-op (0.085 ng/ml which is not at a remission level), are enough proves to me that you may experience recurrence soon. Therefore, due to the high risk of the cancer grades (4 and 5), even if you choose SRT against adjuvant you may expect aggressive spread at the lymph nodes firstly followed with spread in bone.

    Again I would like to know what type of tests have classified the N0 and M0, as well as if you had a “nerve spared surgery”. In any case, the radiation field should include the lymph nodes at the iliac where oligometastatic cancer is usually found.
    You may discuss the matter with your radiologist regarding his opinion on the isodose planning. Some doctors try avoiding side effects giving preference to a shorter field of attack than to a wider (the whole pelvic and iliac), because of age, but you should be the one deciding. I recommend you to do researches on the matter, including to other added benefits if RT is done with hormonal treatment.

    Try getting second opinions on the suggestions and prepare a list of questions to expose to the doctors while you go around. Here are some ideas to your list;
    http://csn.cancer.org/node/224280
    http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor
    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    For anything you decide, treatments tend to get better outcomes at the hands of better diagnosis, professionalism in the physician team and modern facilities. Be positive.

    I hope other survivors express their advice to your case.

    Wishing you luck.

    VGama
  • rexx
    rexx Member Posts: 11
    #7
    VascodaGama said:

    A Layman's Opinion
    Jerry; what a wonderful way to welcome Rex. You done it so well and Rex and all of us are grateful to have you around. Thanks “old” buddy.

    Rex,

    The info you share above seems to be rightful for a choice on adjuvant RT. That is when considering the rates for possibilities at cure, although the risks are high in terms of urinary and bowel damage.
    You may also consider that ED will be highly affected which at 60 y/o may be difficult to accept.
    Here is an article on the matter from a truthful source;
    http://www.europeanurology.com/article/S1569-9056(10)00043-6/fulltext

    My opinion as a layman is that your stats are all indicative that you should not wait. However, do it timely and coordinately (cancer do not spread overnight). The Gleason 9, low velocity on PSADT and extra capsular extensions, as well as the high result of the last PSA post-op (0.085 ng/ml which is not at a remission level), are enough proves to me that you may experience recurrence soon. Therefore, due to the high risk of the cancer grades (4 and 5), even if you choose SRT against adjuvant you may expect aggressive spread at the lymph nodes firstly followed with spread in bone.

    Again I would like to know what type of tests have classified the N0 and M0, as well as if you had a “nerve spared surgery”. In any case, the radiation field should include the lymph nodes at the iliac where oligometastatic cancer is usually found.
    You may discuss the matter with your radiologist regarding his opinion on the isodose planning. Some doctors try avoiding side effects giving preference to a shorter field of attack than to a wider (the whole pelvic and iliac), because of age, but you should be the one deciding. I recommend you to do researches on the matter, including to other added benefits if RT is done with hormonal treatment.

    Try getting second opinions on the suggestions and prepare a list of questions to expose to the doctors while you go around. Here are some ideas to your list;
    http://csn.cancer.org/node/224280
    http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor
    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    For anything you decide, treatments tend to get better outcomes at the hands of better diagnosis, professionalism in the physician team and modern facilities. Be positive.

    I hope other survivors express their advice to your case.

    Wishing you luck.

    VGama

    Thank you for your response...
    VGama,

    If you or any other experienced members here know of an excellent Urologist or Oncologist in the DFW that I can get a second opinion from, I would greatly appreciate it. I am contacting my doc today to set up next PSA and I will certainly be asking a lot of questions, such as the ones you have expressed. I assumed that I had nerve sparing RP, but that will be one of the question I ask. In regard to the reason for the NO, MO, other than the RP surgery and the pathology on the removal of the prostate, sv, pelvic lymph nodes and margins, I have had no other tests, so I am unable to answer your question at this time. My current urologist, was the fifth one I interviewed with including my original urologist, so I was diligently trying to make an informed decision. Part of this decision was based on his experience with robotic RP(over 500) as well as the well respected reputation of the facility here in Dallas(Baylor) that he practises at.

    Thanks again for your insight.

    Rexx
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #8
    rexx said:

    Thank you for your response...
    VGama,

    If you or any other experienced members here know of an excellent Urologist or Oncologist in the DFW that I can get a second opinion from, I would greatly appreciate it. I am contacting my doc today to set up next PSA and I will certainly be asking a lot of questions, such as the ones you have expressed. I assumed that I had nerve sparing RP, but that will be one of the question I ask. In regard to the reason for the NO, MO, other than the RP surgery and the pathology on the removal of the prostate, sv, pelvic lymph nodes and margins, I have had no other tests, so I am unable to answer your question at this time. My current urologist, was the fifth one I interviewed with including my original urologist, so I was diligently trying to make an informed decision. Part of this decision was based on his experience with robotic RP(over 500) as well as the well respected reputation of the facility here in Dallas(Baylor) that he practises at.

    Thanks again for your insight.

    Rexx

    Next?
    Rexx:
    Glad to see you are continuing to educate yourself. You are an empowered patient. Well done.
    Your case is a clear indicator of the problems of psa screening: many men with minor, indolent, insignificant disease will be identified, treated and then have lifetime issues therefrom. Others who could most benefit, with high G scores, find metastasis at a much earlier point and thus are not cured, regardless of the best efforts of doctor, patient, and testing.
    So here you are. You need not limit your search to DFW (Dallas-Fort Worth). There are top PCa oncologists elsewhere in the US and may be worth the travel. I think it almost certain that any oncologist would expect you to look closely at near term radiation. It can be a kind of magic when done correctly. In any case I think that a top radiation oncologist would be your first choice and I am certain that there are outstanding people in DFW with the very best equipment. Your source for radiation timing may have been referring to SWOG 8794 (you can research that online). You have a very long time to go, as the wonderful post above indicates.
  • rexx
    rexx Member Posts: 11
    #9
    tarhoosier said:

    Next?
    Rexx:
    Glad to see you are continuing to educate yourself. You are an empowered patient. Well done.
    Your case is a clear indicator of the problems of psa screening: many men with minor, indolent, insignificant disease will be identified, treated and then have lifetime issues therefrom. Others who could most benefit, with high G scores, find metastasis at a much earlier point and thus are not cured, regardless of the best efforts of doctor, patient, and testing.
    So here you are. You need not limit your search to DFW (Dallas-Fort Worth). There are top PCa oncologists elsewhere in the US and may be worth the travel. I think it almost certain that any oncologist would expect you to look closely at near term radiation. It can be a kind of magic when done correctly. In any case I think that a top radiation oncologist would be your first choice and I am certain that there are outstanding people in DFW with the very best equipment. Your source for radiation timing may have been referring to SWOG 8794 (you can research that online). You have a very long time to go, as the wonderful post above indicates.

    Thank you tarhoosier....
    Thanks so much for your input Tar,

    I went to the website and it was very uplifting....I'm hoping that my ART side effects will be on the minimal side. I will be conferring with my doc real soon to find out his protocol and the possible side effects in regards to the RT he has recommended and who will be administering it. Also, is IMRT the most preferred with the least side effects? Oh, I would travel elsewhere, if necessary, but then taking the first right step is the main issue at hand for me. As you say, Dallas should have many excellent docs to choose from. In the meantime, once again, if any of you guys out there know of any oncologist/urologist in the DFW area you would recommend for second opinions I would be appreciative.

    Thank God for you Guys and the excellent information you share with the rest of us.

    Rexx
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #10
    rexx said:

    Thank you tarhoosier....
    Thanks so much for your input Tar,

    I went to the website and it was very uplifting....I'm hoping that my ART side effects will be on the minimal side. I will be conferring with my doc real soon to find out his protocol and the possible side effects in regards to the RT he has recommended and who will be administering it. Also, is IMRT the most preferred with the least side effects? Oh, I would travel elsewhere, if necessary, but then taking the first right step is the main issue at hand for me. As you say, Dallas should have many excellent docs to choose from. In the meantime, once again, if any of you guys out there know of any oncologist/urologist in the DFW area you would recommend for second opinions I would be appreciative.

    Thank God for you Guys and the excellent information you share with the rest of us.

    Rexx

    Best
    Rexx:
    Find the best radiation oncologist, however that is done. He (she) will certainly then be using the best equipment. This would likely be someone using equipment in a hospital/radiation lab/ radiation center rather than someone using equipment located in his own practice. You can see the conflicts apparent there. It is certainly appropriate to ask if the doctor or his practice has a financial stake in the advice he provides (equipment, referrals, research, et cetera).
    It is the archer and not the arrow
    (I stole that from a radiation oncologist and I love its usefulness and conciseness)
  • rexx
    rexx Member Posts: 11
    #11
    tarhoosier said:

    Best
    Rexx:
    Find the best radiation oncologist, however that is done. He (she) will certainly then be using the best equipment. This would likely be someone using equipment in a hospital/radiation lab/ radiation center rather than someone using equipment located in his own practice. You can see the conflicts apparent there. It is certainly appropriate to ask if the doctor or his practice has a financial stake in the advice he provides (equipment, referrals, research, et cetera).
    It is the archer and not the arrow
    (I stole that from a radiation oncologist and I love its usefulness and conciseness)

    best
    Tar,

    I will be seeing my doc this month for psa followup, at which time, I will be asking who will be doing the radiation. There is a new cancer facility here at Baylor, so to that extent, I would imagine that they have some of the finest equipment. I just spoke with the nurse about my first post-op PSA of 0.085 and although not considered undetectable, she informed me that, that wasn't unusual for many men post-op. Here again, it looks like RT is in order for me.

    Rexx

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