What do you think?

backinthesaddle
backinthesaddle Member Posts: 6
in Prostate Cancer #1
Hello all… I had RP surgery April 2010 and zero PSA until:

August 2011: 0.2
December 2011: 0.1
April 2012: 0.1

My post surgery stats are T3B, 4+3 …What do you think?

Comments

  • bdhilton
    bdhilton Member Posts: 848 Member
    #2
    We have similar scores
    I’m T3b and had surgery in March 2010. From the sounds of this you would appear to be “stable” as I understand it. It does not appear your scores are increasing from the initial .2 over a 9 month period. In fact they went down. What has your oncologist told you? Anyone here understand this?

    All the best in your journey-B
  • VascodaGama
    VascodaGama Member Posts: 3,641 Member
    #3
    bdhilton said:

    We have similar scores
    I’m T3b and had surgery in March 2010. From the sounds of this you would appear to be “stable” as I understand it. It does not appear your scores are increasing from the initial .2 over a 9 month period. In fact they went down. What has your oncologist told you? Anyone here understand this?

    All the best in your journey-B

    Decrease or Increase ?
    Saddle
    Welcome to the board.
    Your “Zero” comment on the PSA after surgery has no meaning.
    Can you share info on the real numbers you got after surgery? It would also help to know more about your diagnosis pre surgery, age and treatment history.
    As Hilton comments, the three tests seem to indicate a decreasing PSA which may mean success, but that could also be related to any supplement or medication effects.

    It is common practice after surgery, to have the PSA tested with higher sensitive assays with LLD of two decimal places (0.XX ng/ml) because those should be the levels in guys without prostate gland.
    Your December test of 0.1 could in fact be 0.01 which could be lower than your April tests of 0.1, meaning that there was an increase not an equivalent result.

    I would recommend you to get tested in a laboratory with higher sensitive assays.

    “I wish you the best of luck on this unwanted journey. It is not fun, it is not easy, but, it can be done. You just have to decide the way that is right for you.” …………..Susiebelle (Sep 2010)

    VGama
  • caseyh
    caseyh Member Posts: 63
    #4
    Be Vigilant
    I too have a history similar to yours. I had an RP in 2000 and quickly dropped to undetectable. I think it was 23 months later that my PSA jumped straight to 0.2. Unlike yours, it continued to increase until I started HT. I think that VGama gave you good advice. Request to have an Ultra-sensitive PSA test done at least bimonthly. Doctors usually extend the period between tests as the number of post surgery days increase. Insist on frequent testing until you are comfortable with your situation. If the 0.2 test was assayed at a local hospital or lab,there is a very good chance that it is an erroneous result or rounding error. I have used a number of labs over the years and found that many of them are inconsistent. LabCorp is the most consistent lab that I have used and they do an ultra-sensitive test. In any case, be vigilant, but do not let this get you down. You are most likely in much better shape than you think.
    Good Luck!
  • backinthesaddle
    backinthesaddle Member Posts: 6
    #5
    All of my readings after
    All of my readings after surgery in April 2010 were less than .1 (not measurable) until a test I had in August 2011 that was .2. My test in December 2011 was .1 and then my oncologist went to the ultra sensitive test and my April 2012 PSA was .14

    Pre surgery /after biopsy I was given a Gleason score of 4+3, TB2 with a PSA of 3.0 at the highest before surgery. After surgery I was given a T3B and the Gleason remained a 4+3.

    I am getting PSA test every 4 month and my next one is 4 month. My oncologist has my blood work done by both LabCorp and Qwest.

    Like most of you from this group I have learned to eat no dairy, red meat and basically eat a Mediterranean Diet.

    What does all of this mean? If I am “stable” as bdhilton suggest then what does that mean? I have not had any other treatments except my surgery.
  • VascodaGama
    VascodaGama Member Posts: 3,641 Member
    #6
    backinthesaddle said:

    All of my readings after
    All of my readings after surgery in April 2010 were less than .1 (not measurable) until a test I had in August 2011 that was .2. My test in December 2011 was .1 and then my oncologist went to the ultra sensitive test and my April 2012 PSA was .14

    Pre surgery /after biopsy I was given a Gleason score of 4+3, TB2 with a PSA of 3.0 at the highest before surgery. After surgery I was given a T3B and the Gleason remained a 4+3.

    I am getting PSA test every 4 month and my next one is 4 month. My oncologist has my blood work done by both LabCorp and Qwest.

    Like most of you from this group I have learned to eat no dairy, red meat and basically eat a Mediterranean Diet.

    What does all of this mean? If I am “stable” as bdhilton suggest then what does that mean? I have not had any other treatments except my surgery.

    Get tested and second opinions to verify Recurrence
    I think that Hilton’s opinion may have been different if you have posted the last PSA as 0.14 instead of 0.1
    As I commented above, the PSA used as a tool to judge treatment outcomes in guys with no prostate gland are in the two decimal places, and yours 0.14 is not 0.1 as mentioned in your first post. It corresponds to 0.2 (in a single decimal place). Such would mean an increase which could refer to biochemical failure. Recurrence may come next and you should be prepared to follow a salvage treatment.
    According to NCCN guidelines, a PSA of 0.2 after surgery indicates failure. At 0.4 recurrences is declared.

    In fact, I am surprised that your doctor has not given any recommendation with regards to the PSA behaviour at the 12-month mark (3x4 months). After surgery remission is expected at a level lower than 0.06, on the three weeks mark. Any higher value or increase after the first tests requires caution.
    Have you seen your surgeon since surgery?

    Salvage treatments though are decided on pre op diagnosis and on the pathological report given after surgery. In this report there will be stated what the pathologist found in the prostate specimen. Surgical margins, extra capsular invasion, Gleason score and type of cells, metastases to lymph nodes, seminal, etc. All this information is important to get to a decision on the proper treatment. Image studies and other tests (lipids, etc) as well as your health status (other illness) and age are considered too.

    You should get a second opinion from another doctor, giving preferences to a medical oncologist.
    In this forum there are many survivors that can help you but you need to share more info on the tests and results. Do you have a copy of the pathologist report? What does it say?
    If not, get a copy from your doctor because it will be required in your future journey.

    I would recommend you to prepare a list of questions to discuss them with the doctors you visit. Here is an idea for your list;
    http://csn.cancer.org/node/224280
    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
    http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor

    A compendium on Prostate cancer and care;
    http://www.lef.org/protocols/prtcl-138.shtml
    Books;
    https://www.google.com/search?q=Treatments+for+Prostate+Cancer&btnG=Search+Books&tbm=bks&tbo=1

    Study;
    http://www.ncbi.nlm.nih.gov/pubmed/18050294

    Wishing you get a response to your queries.
    The best to you.

    VGama
  • backinthesaddle
    backinthesaddle Member Posts: 6
    #7
    VascodaGama said:

    Get tested and second opinions to verify Recurrence
    I think that Hilton’s opinion may have been different if you have posted the last PSA as 0.14 instead of 0.1
    As I commented above, the PSA used as a tool to judge treatment outcomes in guys with no prostate gland are in the two decimal places, and yours 0.14 is not 0.1 as mentioned in your first post. It corresponds to 0.2 (in a single decimal place). Such would mean an increase which could refer to biochemical failure. Recurrence may come next and you should be prepared to follow a salvage treatment.
    According to NCCN guidelines, a PSA of 0.2 after surgery indicates failure. At 0.4 recurrences is declared.

    In fact, I am surprised that your doctor has not given any recommendation with regards to the PSA behaviour at the 12-month mark (3x4 months). After surgery remission is expected at a level lower than 0.06, on the three weeks mark. Any higher value or increase after the first tests requires caution.
    Have you seen your surgeon since surgery?

    Salvage treatments though are decided on pre op diagnosis and on the pathological report given after surgery. In this report there will be stated what the pathologist found in the prostate specimen. Surgical margins, extra capsular invasion, Gleason score and type of cells, metastases to lymph nodes, seminal, etc. All this information is important to get to a decision on the proper treatment. Image studies and other tests (lipids, etc) as well as your health status (other illness) and age are considered too.

    You should get a second opinion from another doctor, giving preferences to a medical oncologist.
    In this forum there are many survivors that can help you but you need to share more info on the tests and results. Do you have a copy of the pathologist report? What does it say?
    If not, get a copy from your doctor because it will be required in your future journey.

    I would recommend you to prepare a list of questions to discuss them with the doctors you visit. Here is an idea for your list;
    http://csn.cancer.org/node/224280
    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
    http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor

    A compendium on Prostate cancer and care;
    http://www.lef.org/protocols/prtcl-138.shtml
    Books;
    https://www.google.com/search?q=Treatments+for+Prostate+Cancer&btnG=Search+Books&tbm=bks&tbo=1

    Study;
    http://www.ncbi.nlm.nih.gov/pubmed/18050294

    Wishing you get a response to your queries.
    The best to you.

    VGama

    Vgama…I am being treated
    Vgama…

    I am being treated by a well-known and conservative oncologist and he has also stated to me today that I am “stable” (whatever the hell that means) and salvage radiation is not needed at this point in time. As it would be nice to believe that a biochemical failure will not happen it is very probably that it will being a T3b.

    One of the things I am trying to figure out is what my doubling time is?

    All PSA test up to my August 2011 had “no measurable amount of PSA”. That would be approx 17 months with “no measurable amount of PSA”.

    August 2011: 0.2
    December 2011: 0.1
    April 2012: 0.14

    Again, I can assume the worst but hope for the best and that would be a long doubling time…Anyway, trying to figure it out.

    Thank you
  • caseyh
    caseyh Member Posts: 63
    #8
    Listen to people who have been there
    I agree with your oncologist. It is early to think about salvage radiation. He might be right about you being stable, or he might be wrong. One thing that we do know is that your PSA shot from 0.00 to 0.2 and has been greater than 1.0 for the past 8 months. It will take time to and several more ultra-sensitive PSA tests to figure out exactly what is happening, but if I were you, I wouldn't sit around waiting for the other shoe to fall. In this respect, VGama has given you excellent advice. Following his advice will educate you about your disease and begin the process of putting YOU in charge of your own fate. I can tell you from personal experience that “taking charge” will lead to a positive mental outlook that will serve you well. It is somewhat liberating.

    I may be wrong, but I think that it is a little early to be thinking about PSA doubling time. Your PSA results to date are probably useless for this purpose because they are sketchy and erratic. MSK has a PSA Doubling Time Calculator at: http://nomograms.mskcc.org/Prostate/PsaDoublingTime.aspx
  • backinthesaddle
    backinthesaddle Member Posts: 6
    #9
    caseyh said:

    Listen to people who have been there
    I agree with your oncologist. It is early to think about salvage radiation. He might be right about you being stable, or he might be wrong. One thing that we do know is that your PSA shot from 0.00 to 0.2 and has been greater than 1.0 for the past 8 months. It will take time to and several more ultra-sensitive PSA tests to figure out exactly what is happening, but if I were you, I wouldn't sit around waiting for the other shoe to fall. In this respect, VGama has given you excellent advice. Following his advice will educate you about your disease and begin the process of putting YOU in charge of your own fate. I can tell you from personal experience that “taking charge” will lead to a positive mental outlook that will serve you well. It is somewhat liberating.

    I may be wrong, but I think that it is a little early to be thinking about PSA doubling time. Your PSA results to date are probably useless for this purpose because they are sketchy and erratic. MSK has a PSA Doubling Time Calculator at: http://nomograms.mskcc.org/Prostate/PsaDoublingTime.aspx

    Casey, for sure a proper
    Casey, for sure a proper diet, reduced stress, being realist and educated yourself will help put you in a positive mental outlook like you and VGama are saying…. I guess you are probably right with it is early to assess my trend of 0.00 to 0.2 to 0.14 over the last 8 months or so…but I thought I would see if anybody had a similar experience. Thank you
  • caseyh
    caseyh Member Posts: 63
    #10
    backinthesaddle said:

    Casey, for sure a proper
    Casey, for sure a proper diet, reduced stress, being realist and educated yourself will help put you in a positive mental outlook like you and VGama are saying…. I guess you are probably right with it is early to assess my trend of 0.00 to 0.2 to 0.14 over the last 8 months or so…but I thought I would see if anybody had a similar experience. Thank you

    It's Frustrating!
    I've been in your shoes. As a matter of fact, I am still in your shoes. I know how gut-wrenching these days can be. I understand your frustration. There are some really great people in this group with years of experience and keen insight. They are an excellent source of ideas and resources. I wish you many more years of 0.14 PSA readings. Feel free to email me with any questions about my experiences or disease history.
    Wishing you the best!

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