Considering end of AS due to new pathology

MCinNC
MCinNC Member Posts: 40 Member
in Prostate Cancer #1

Hello all.  I've been on AS since 2010 diagnosis.   Posted often back then and have given periodic updates since.  Original diagnosis was with 1/12 cores positive, 5% of tissue, 3+3 Gleason at age 56.   First three biopsies had exactly the same results.  Recently, after the 4th biopsy, 3/12 cores were positiive, 10-15% of tissue, and some 3+4=7 Gleason.   PSA has been and remains around 2.5.  Now age 60.

I have been very comfortable with AS as time has passed, but based on the new results I'll be reevaluating the options.  In addition to my local urologist, I've been being followed by a surgeon at the UNC cancer center who specializes in da Vinci, and I will be meeting with specialists at both UNC and Duke concerning radiation options.  Back in 2010 I had narrowed my treatment options to robotic surgery or Cyberknife.  Given I really like the UNC surgeon, along with his qualifications and experience, I'm pretty sure that I'll go that route if surgery is chosen.  As to radiation, I'm going to look at all of that again with the new data that has become available since 2010. 

I'll post some updates as I work through the available choices.

Please feel free to refer me to any current studies or info re success/cure rates and quality of life comparisons, or current scans or tests that might be warranted to shed more light on the specifics of my case.   I"ll also go back through the previous posts to pick these up too.

I appreciate all of the great info that this site and the regular posters provide.  It is great to see the familiar names of posters still at it providing great advice to those who really need it.  Great work. 

Mac

 (PS:  don't see Kongo's name recently - he was really super too wasn't he)

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #2
    Mac,I am sorry that your

    Mac,

    I am sorry that your cancer has progressed so that you need to seek active treatment. Your Active Surveillance program had been successful, since you were able to go on with your life for the last four and half years, without side effects of major treatments; and had time to research active treatment options.

    If I was you I would send the results of your pathology to an expert pathologist that specialized in prostate cancer in order to insure the results that you received are accurate, since determining Gleason Scores are subjective.....Johns Hopkins in a choice of excellence.

    I would also obtain a multiparametric MRI with a tesla 3.0 to see if there is any extra capsular extension.

    There is a brand new treatment method that is currently available that some with low involvement cancer pursue. This is called Focal Laser Ablation. I am not recomending  or not recommending this treatment type however, I suggest that you investigate. Here is a site that discusses this treatment type in detail. https://www.inspire.com/groups/us-too-prostate-cancer/discussion/focal-laser-ablation-patients.

    In each active treatment type, there are "Artists" who perform these, so you want to determine the treatment type that you want to have, and the "Artist" for that treatment.

    ...................

    As with many , this site has filled the needs of Kongo...now he has moved on , enjoying life.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    Similiar

    MC,

    My clinical situation was virtually identical to yours.  I had indolent disease at 58 years old, and studied radiation and surgery in considerable detail. I knew I would never be comfortable with AS, and dismissed it as soon as I was diagnosed, although my urologist did mention it as an option.  I'm glad it worked well for you for several years.  I read a lot of the most recent material on IGRT, and was pretty much sold on it, but decided on surgery, which I had two weeks ago, with the da Vinci method.  I would say that there is just about an exact equivalence today in outcomes today between IGRT and surgery for most moderate to mild, first-line treatments.

    Radiation is constantly improving, whereas surgery pretty much remains surgery, although the da Vinci does reduce scarring. Dr Peter Scardino  of Sloan-Kettering writes in his Prostate Book that open RP and da Vinci are essentially identical in outcomes. That is, they have the same cure rates; the differences are in the packaging, and perhaps quicker healing times.  I am two weeks and two days out of surgery, and my incisions are totally healed.  My doctor told me that he was able to spare the erectile nerves, but mentioned that any return to potency may take quite some time.   My continence recovery is coming along way ahead of average.  The pathology report discovered that I was Stage T2A, whereas the biopsy and DRE showed Stage 1. The disease was not fast moving, but was advancing throughout the gland.

    Dr. Scardino in his book writes that there is no advantage to Cyberknife over IGRT, despite the slick marketing that it has going for it.  The radiation oncologist whom I met does most of the most recent radiation techniques, but said to me directly that he does not view Cyberknife highly, and does not consider it as good as IGRT.  One doctor's opinion, I know.

    I am very pleased with my daVinci surgery, and would do it again. My surgeon also is highly experienced with the technique, and told my wife and I that he has done nearly 1,000 of them.  I believe that I would have been equally happy with IGRT, but will never know.

    I also remember Kongo from a few years ago, when I was reading this Board for a friend.  I miss him, and his very thoughtful and insighful posts.

    Best of luck with your decisions,

    max

     

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #4
    Max Former Hodgkins Stage 3 said:

    Similiar

    MC,

    My clinical situation was virtually identical to yours.  I had indolent disease at 58 years old, and studied radiation and surgery in considerable detail. I knew I would never be comfortable with AS, and dismissed it as soon as I was diagnosed, although my urologist did mention it as an option.  I'm glad it worked well for you for several years.  I read a lot of the most recent material on IGRT, and was pretty much sold on it, but decided on surgery, which I had two weeks ago, with the da Vinci method.  I would say that there is just about an exact equivalence today in outcomes today between IGRT and surgery for most moderate to mild, first-line treatments.

    Radiation is constantly improving, whereas surgery pretty much remains surgery, although the da Vinci does reduce scarring. Dr Peter Scardino  of Sloan-Kettering writes in his Prostate Book that open RP and da Vinci are essentially identical in outcomes. That is, they have the same cure rates; the differences are in the packaging, and perhaps quicker healing times.  I am two weeks and two days out of surgery, and my incisions are totally healed.  My doctor told me that he was able to spare the erectile nerves, but mentioned that any return to potency may take quite some time.   My continence recovery is coming along way ahead of average.  The pathology report discovered that I was Stage T2A, whereas the biopsy and DRE showed Stage 1. The disease was not fast moving, but was advancing throughout the gland.

    Dr. Scardino in his book writes that there is no advantage to Cyberknife over IGRT, despite the slick marketing that it has going for it.  The radiation oncologist whom I met does most of the most recent radiation techniques, but said to me directly that he does not view Cyberknife highly, and does not consider it as good as IGRT.  One doctor's opinion, I know.

    I am very pleased with my daVinci surgery, and would do it again. My surgeon also is highly experienced with the technique, and told my wife and I that he has done nearly 1,000 of them.  I believe that I would have been equally happy with IGRT, but will never know.

    I also remember Kongo from a few years ago, when I was reading this Board for a friend.  I miss him, and his very thoughtful and insighful posts.

    Best of luck with your decisions,

    max

     

    Back to the Beginning

    Mac

    It seems to me that since your initial diagnosis not much have changed in the basics of dealing with the PCa. There are now more convincing techniques to detect and locate cancer with PET machines, and in treatments the combination of therapies (concurrent hormonal plus radiation) have improved outcomes.

    I think you should get certain about your present status and then go back to the beginning. Kongo’s first post to you is still valid in my opinion. Get second opinions and follow what you and your family are most comfortable with.

    Here is the link to Kongo’s;
         http://csn.cancer.org/node/200207#comment-896247

    Here is the link to your initial decision;
         http://csn.cancer.org/node/203437

    Best wishes and luck in your continuing journey.

    VG

  • MCinNC
    MCinNC Member Posts: 40 Member
    #5
    hopeful and optimistic said:

    Mac,I am sorry that your

    Mac,

    I am sorry that your cancer has progressed so that you need to seek active treatment. Your Active Surveillance program had been successful, since you were able to go on with your life for the last four and half years, without side effects of major treatments; and had time to research active treatment options.

    If I was you I would send the results of your pathology to an expert pathologist that specialized in prostate cancer in order to insure the results that you received are accurate, since determining Gleason Scores are subjective.....Johns Hopkins in a choice of excellence.

    I would also obtain a multiparametric MRI with a tesla 3.0 to see if there is any extra capsular extension.

    There is a brand new treatment method that is currently available that some with low involvement cancer pursue. This is called Focal Laser Ablation. I am not recomending  or not recommending this treatment type however, I suggest that you investigate. Here is a site that discusses this treatment type in detail. https://www.inspire.com/groups/us-too-prostate-cancer/discussion/focal-laser-ablation-patients.

    In each active treatment type, there are "Artists" who perform these, so you want to determine the treatment type that you want to have, and the "Artist" for that treatment.

    ...................

    As with many , this site has filled the needs of Kongo...now he has moved on , enjoying life.

     

    Hopeful,
    Thanks for the

    Hopeful,

    Thanks for the comments.  I would definitely continue on AS if I had your data.  Still one core, under 5%, Gleason 6, PSA about the same.  I would ride that horse as long as it lasted.

    I'll start seeing some of the "artists" this week and will be sure to ask about available diagnostic tests including the MRI with the tesla 3.0.

    Great to see that things are going well for you.

     

    Mac

     

  • MCinNC
    MCinNC Member Posts: 40 Member
    #6
    Max Former Hodgkins Stage 3 said:

    Similiar

    MC,

    My clinical situation was virtually identical to yours.  I had indolent disease at 58 years old, and studied radiation and surgery in considerable detail. I knew I would never be comfortable with AS, and dismissed it as soon as I was diagnosed, although my urologist did mention it as an option.  I'm glad it worked well for you for several years.  I read a lot of the most recent material on IGRT, and was pretty much sold on it, but decided on surgery, which I had two weeks ago, with the da Vinci method.  I would say that there is just about an exact equivalence today in outcomes today between IGRT and surgery for most moderate to mild, first-line treatments.

    Radiation is constantly improving, whereas surgery pretty much remains surgery, although the da Vinci does reduce scarring. Dr Peter Scardino  of Sloan-Kettering writes in his Prostate Book that open RP and da Vinci are essentially identical in outcomes. That is, they have the same cure rates; the differences are in the packaging, and perhaps quicker healing times.  I am two weeks and two days out of surgery, and my incisions are totally healed.  My doctor told me that he was able to spare the erectile nerves, but mentioned that any return to potency may take quite some time.   My continence recovery is coming along way ahead of average.  The pathology report discovered that I was Stage T2A, whereas the biopsy and DRE showed Stage 1. The disease was not fast moving, but was advancing throughout the gland.

    Dr. Scardino in his book writes that there is no advantage to Cyberknife over IGRT, despite the slick marketing that it has going for it.  The radiation oncologist whom I met does most of the most recent radiation techniques, but said to me directly that he does not view Cyberknife highly, and does not consider it as good as IGRT.  One doctor's opinion, I know.

    I am very pleased with my daVinci surgery, and would do it again. My surgeon also is highly experienced with the technique, and told my wife and I that he has done nearly 1,000 of them.  I believe that I would have been equally happy with IGRT, but will never know.

    I also remember Kongo from a few years ago, when I was reading this Board for a friend.  I miss him, and his very thoughtful and insighful posts.

    Best of luck with your decisions,

    max

     

    Good Wishes on your journey

    Max,

    It does look like we had similar cases.  I'm glad you were comfortable with your surgeon.  Finding experts whose opinion you respect AND who you relate well with and communicate well with has been a big deal for me.  I hope that your rehab and recovery goes smoothly.

    Thanks for mentioning the Scardino book.  I'm re-reading the Walsh book - with updates since my last go around.  And I'm going to read Scardino's too. 

    Getting a handle on the comparative treatment success rates and side effects for procedures on cases similar to mine is pretty complex task.  But I don't want to make a decision without feeling satisfied that I know what there is to know.

    Best Wishes,

    Mac

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #7
    Insight and current study about SBRT

    Mac,

    As you may know Johns Hopkins and other institutions are treatment men who are over 70 with Gleasons 3+4=7 in their active surveillance programs.

    Now Johns Hopkins does not use MRI guided technology in doing biopsies.

    ........

    At some institutions, men who are under 70 with a 3+4=7 and low volume disease are treated with Active Surveillance....some of these institutions use a multiparametric MRI with a T3 magnet; then either a three dimensional biopsy or another MRI in the bore.  I gues that these doctors believe that they can better track  what is going on........this is something that you may wish to investigate.

    -------------------------

    Here is study of seven years about the results of SBRT treatment.

    http://csn.cancer.org/node/291691

     

     

     

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