Update from Lewvino

lewvino
lewvino Member Posts: 1,010

I had my first check up following my radiation treatments and I am back in the 0 club! They will recheck in six months and then hopefully if 0 I get to go back to yearly testing.

For anyone new on the forum I'm including my 5 year history since diagnosis.

lewvino

Age 59 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN.

Final Path report:

20% of the prostate Involved
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
Twenty month PSA - 0
26 month PSA - 0
38 month PSA - .2
48 month PSA - .3
IMRT Radiation 68 GY- Completed Oct 25, 2013
56 month PSA - 0

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Wonderful news

    glad to read of your excellent number

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    I wonder the meaning of your "real 0" at this timing in post SRT. Is it a constant or less than 0? Small decimal fractions are in fact important to judge progression of the disease because you have no prostate in place. I would suggest tests with two decimal places (0.XX ng/ml). I believe it would be better for you to discuss with your doctor to shorten the intervals between tests till nadir is established. After that, you could span the tests and return to the single digit assays. Typically, a slow decrease is associated with longer survival (PSADT above 10 months).
    I wish your Zero becomes a constant for life and that it gives you the peace of mind so deserved.

    Can you describe about your experience or symptoms you could associate with the radiotherapy. What was the field of radiation? Did it include the lymph nodes at the iliac?

    Best wishes for complete recovery and a good final outcome.

    VGama  Wink

     

  • lewvino
    lewvino Member Posts: 1,010

    I wonder the meaning of your "real 0" at this timing in post SRT. Is it a constant or less than 0? Small decimal fractions are in fact important to judge progression of the disease because you have no prostate in place. I would suggest tests with two decimal places (0.XX ng/ml). I believe it would be better for you to discuss with your doctor to shorten the intervals between tests till nadir is established. After that, you could span the tests and return to the single digit assays. Typically, a slow decrease is associated with longer survival (PSADT above 10 months).
    I wish your Zero becomes a constant for life and that it gives you the peace of mind so deserved.

    Can you describe about your experience or symptoms you could associate with the radiotherapy. What was the field of radiation? Did it include the lymph nodes at the iliac?

    Best wishes for complete recovery and a good final outcome.

    VGama  Wink

     

    Vasco,
    I have talked to my

    Vasco,

    I have talked to my urologist about the ultra sensitive test and tend to agree with him. I'm sure some like the extra accuracy but he has seen to many men and families worry over that extra digit in the reading. So I will stick with the regular test for now but I do appreciate your thoughts.

     

    We always knew there was the chance of recurrance due to my positive margin post Davinci.

    The radiated area was to the area that was the prostate bed and surronding including from the bladder neck down. The beam was shot from nine different directions and the radiation Doctor showed me on scans area being radiated. It looked larger than I had imagined when she drew a circle on the scan showing me.

    My experience with the Radiotherapy was far better than I had ever imagined. I was very apprehensive at first and after a week on treatments you get used to the noises, etc. When the machine was on the right hand side of me to aiming straight down from above i could watch a computer monitor that showed the target area.

    My side effects were very minimal. I had a couple days about midway of a mucus discharge with Bowel Movement. One day my Bowel movement was a really strange grey color to the more traditional color. Also About midweek I started getting the fatigue and just felt like setting in the easy chair at home for several hrs after treatment. Typical this was the worse on Saturday and Sunday. Several people from Church commented on how week I appeared at church when I would walk up front for special prayer time. Church is important to me and I did not miss a Service during treatments.

    It was interesting to me that the last week of treatment I did not seem as tired as before. I had assumed it would be really bad there at the end.

    Other than that no other problems. No increased need of urination at night, usually got up once per night. During the day time uriation was more often than normal to perhaps needing to urinate every hour or less while I was awake.

    If I had to due over again I would follow the exact path that I have so far. davince surgery and then Radiation at the four year mark when PSA reached .3

    The doctors were confident that it was a local recurrance in the Prostate bed due to the location of my positive margin. Also they said that .3 is in ideal time to start salvage radiation.

    I don't think an extra decimal point in my psa readings would have made any change in the decisions that I made with the dr. input. Also they were not pushy in any way and answered all Questions that I had.

     

    lewvino

     

  • starr15
    starr15 Member Posts: 32 Member
    lewvino said:

    Vasco,
    I have talked to my

    Vasco,

    I have talked to my urologist about the ultra sensitive test and tend to agree with him. I'm sure some like the extra accuracy but he has seen to many men and families worry over that extra digit in the reading. So I will stick with the regular test for now but I do appreciate your thoughts.

     

    We always knew there was the chance of recurrance due to my positive margin post Davinci.

    The radiated area was to the area that was the prostate bed and surronding including from the bladder neck down. The beam was shot from nine different directions and the radiation Doctor showed me on scans area being radiated. It looked larger than I had imagined when she drew a circle on the scan showing me.

    My experience with the Radiotherapy was far better than I had ever imagined. I was very apprehensive at first and after a week on treatments you get used to the noises, etc. When the machine was on the right hand side of me to aiming straight down from above i could watch a computer monitor that showed the target area.

    My side effects were very minimal. I had a couple days about midway of a mucus discharge with Bowel Movement. One day my Bowel movement was a really strange grey color to the more traditional color. Also About midweek I started getting the fatigue and just felt like setting in the easy chair at home for several hrs after treatment. Typical this was the worse on Saturday and Sunday. Several people from Church commented on how week I appeared at church when I would walk up front for special prayer time. Church is important to me and I did not miss a Service during treatments.

    It was interesting to me that the last week of treatment I did not seem as tired as before. I had assumed it would be really bad there at the end.

    Other than that no other problems. No increased need of urination at night, usually got up once per night. During the day time uriation was more often than normal to perhaps needing to urinate every hour or less while I was awake.

    If I had to due over again I would follow the exact path that I have so far. davince surgery and then Radiation at the four year mark when PSA reached .3

    The doctors were confident that it was a local recurrance in the Prostate bed due to the location of my positive margin. Also they said that .3 is in ideal time to start salvage radiation.

    I don't think an extra decimal point in my psa readings would have made any change in the decisions that I made with the dr. input. Also they were not pushy in any way and answered all Questions that I had.

     

    lewvino

     

    Yay! 
    i pray that the beast

    Yay! 

    i pray that the beast has been irradicated.

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    lewvino said:

    Vasco,
    I have talked to my

    Vasco,

    I have talked to my urologist about the ultra sensitive test and tend to agree with him. I'm sure some like the extra accuracy but he has seen to many men and families worry over that extra digit in the reading. So I will stick with the regular test for now but I do appreciate your thoughts.

     

    We always knew there was the chance of recurrance due to my positive margin post Davinci.

    The radiated area was to the area that was the prostate bed and surronding including from the bladder neck down. The beam was shot from nine different directions and the radiation Doctor showed me on scans area being radiated. It looked larger than I had imagined when she drew a circle on the scan showing me.

    My experience with the Radiotherapy was far better than I had ever imagined. I was very apprehensive at first and after a week on treatments you get used to the noises, etc. When the machine was on the right hand side of me to aiming straight down from above i could watch a computer monitor that showed the target area.

    My side effects were very minimal. I had a couple days about midway of a mucus discharge with Bowel Movement. One day my Bowel movement was a really strange grey color to the more traditional color. Also About midweek I started getting the fatigue and just felt like setting in the easy chair at home for several hrs after treatment. Typical this was the worse on Saturday and Sunday. Several people from Church commented on how week I appeared at church when I would walk up front for special prayer time. Church is important to me and I did not miss a Service during treatments.

    It was interesting to me that the last week of treatment I did not seem as tired as before. I had assumed it would be really bad there at the end.

    Other than that no other problems. No increased need of urination at night, usually got up once per night. During the day time uriation was more often than normal to perhaps needing to urinate every hour or less while I was awake.

    If I had to due over again I would follow the exact path that I have so far. davince surgery and then Radiation at the four year mark when PSA reached .3

    The doctors were confident that it was a local recurrance in the Prostate bed due to the location of my positive margin. Also they said that .3 is in ideal time to start salvage radiation.

    I don't think an extra decimal point in my psa readings would have made any change in the decisions that I made with the dr. input. Also they were not pushy in any way and answered all Questions that I had.

     

    lewvino

     

    Good luck!

    I've read your posts with interest since I 1st joined this forum over 4 years ago.  I was sorry to hear of the recurrance of your PCa and hope the salvage radiation treatment works for you.  Good luck!

  • BRONX52
    BRONX52 Member Posts: 156
    lewvino said:

    Vasco,
    I have talked to my

    Vasco,

    I have talked to my urologist about the ultra sensitive test and tend to agree with him. I'm sure some like the extra accuracy but he has seen to many men and families worry over that extra digit in the reading. So I will stick with the regular test for now but I do appreciate your thoughts.

     

    We always knew there was the chance of recurrance due to my positive margin post Davinci.

    The radiated area was to the area that was the prostate bed and surronding including from the bladder neck down. The beam was shot from nine different directions and the radiation Doctor showed me on scans area being radiated. It looked larger than I had imagined when she drew a circle on the scan showing me.

    My experience with the Radiotherapy was far better than I had ever imagined. I was very apprehensive at first and after a week on treatments you get used to the noises, etc. When the machine was on the right hand side of me to aiming straight down from above i could watch a computer monitor that showed the target area.

    My side effects were very minimal. I had a couple days about midway of a mucus discharge with Bowel Movement. One day my Bowel movement was a really strange grey color to the more traditional color. Also About midweek I started getting the fatigue and just felt like setting in the easy chair at home for several hrs after treatment. Typical this was the worse on Saturday and Sunday. Several people from Church commented on how week I appeared at church when I would walk up front for special prayer time. Church is important to me and I did not miss a Service during treatments.

    It was interesting to me that the last week of treatment I did not seem as tired as before. I had assumed it would be really bad there at the end.

    Other than that no other problems. No increased need of urination at night, usually got up once per night. During the day time uriation was more often than normal to perhaps needing to urinate every hour or less while I was awake.

    If I had to due over again I would follow the exact path that I have so far. davince surgery and then Radiation at the four year mark when PSA reached .3

    The doctors were confident that it was a local recurrance in the Prostate bed due to the location of my positive margin. Also they said that .3 is in ideal time to start salvage radiation.

    I don't think an extra decimal point in my psa readings would have made any change in the decisions that I made with the dr. input. Also they were not pushy in any way and answered all Questions that I had.

     

    lewvino

     

    Great news !! Welcome back to

    Great news !! Welcome back to the "0" club and let's make it a point to be lifetime members! Congrats again and take care--Dan

  • hunter49
    hunter49 Member Posts: 240 Member
    Great news Lew very happy for

    Great news Lew very happy for you.  Keep up the good work