Post surgery PSA: 0.1 or <0.1 the target?

lew_in_marietta
lew_in_marietta Member Posts: 14
edited March 2014 in Prostate Cancer #1
My post surgery PSA was 0.1. My doctor, who wants me to have follow up radiation, says the magic number is <0.1, that 0.1 says there is something there to measure. I've read other places that >0.1 says there is possibly something there. I'm having another PSA soon but wonder if 0.1 is something to worry about. Because I have a transplanted kidney, I don't want follow up radiation unless I have to because of possible damage to the kidney, which is directly adjacent to the area. Does 0.1 indicate some cancer left?

Lew
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Comments

  • lewvino
    lewvino Member Posts: 1,010
    I would discuss in detail
    I would discuss in detail with your Doc. I have been told for me (Positive margin) that if I hit .2 then I would start radiation followup. So far pulling 0 at 13 months post surgery.

    Larry
  • Kongo
    Kongo Member Posts: 1,166 Member
    Post RP PSA
    Lew,

    I think your doctor is being very conservative if not over-cautious. As Larry indicated, most doctors view 0.2 ng/ml as the limit where they believe cancer was left behind and is still producing PSA. The first reading could just be a laboratory anamoly and you may want to have it done again. I would also recommend tracking your PSA doubling time and velocity as those parameters are used as prognostic indicators as to how much PCa might be left.

    If it turns out that they did miss some, you will want to determine where it is and whether or not it has migrated to your lymph nodes or seminal vesicules. There are some tests that measure that, ProstaScint being one.

    I understand your concern about potential radiation damage to your kidney but if they can determine that any residual cancer is in the prostate bed alone, then modern IMRT can very accurately shaped to minimize dosage levels to other organs. I would also inquire as to whether any of the HT drugs used today have any advantage of one over the other with respect to potential effect on the kidney.

    I am sure you are feeling a lot of anxiety about the PSA score...but at the very low end of the spectrum, I believe the accuracy should be taken with a grain of salt. Three or more consecutive rises or a reading above 0.2 ng/ml ought to be something that should launch consideration of follow-on treatment.

    Best to you.
  • Skid Row Tom
    Skid Row Tom Member Posts: 125
    PSA scores
    I've also been told that greater than .2 is cause for concern. For what it's worth, following pca surgery, my fist several PSA's were less than .01. These PSA's were performed at Johns Hopkins. Since then, I've had PSA's drawn by my local urologist (different lab). All "local" scores have been reported at less than .1 - undetectable. My next appointment is Nov. 26th. I'm going to ask him if the lab uses a different sensitivity test, if that's the lab's way of reporting scores, or if that's his way of reporting scores to the patient. The magic word here is "undetectable".
  • ob66
    ob66 Member Posts: 227 Member
    Kongo said:

    Post RP PSA
    Lew,

    I think your doctor is being very conservative if not over-cautious. As Larry indicated, most doctors view 0.2 ng/ml as the limit where they believe cancer was left behind and is still producing PSA. The first reading could just be a laboratory anamoly and you may want to have it done again. I would also recommend tracking your PSA doubling time and velocity as those parameters are used as prognostic indicators as to how much PCa might be left.

    If it turns out that they did miss some, you will want to determine where it is and whether or not it has migrated to your lymph nodes or seminal vesicules. There are some tests that measure that, ProstaScint being one.

    I understand your concern about potential radiation damage to your kidney but if they can determine that any residual cancer is in the prostate bed alone, then modern IMRT can very accurately shaped to minimize dosage levels to other organs. I would also inquire as to whether any of the HT drugs used today have any advantage of one over the other with respect to potential effect on the kidney.

    I am sure you are feeling a lot of anxiety about the PSA score...but at the very low end of the spectrum, I believe the accuracy should be taken with a grain of salt. Three or more consecutive rises or a reading above 0.2 ng/ml ought to be something that should launch consideration of follow-on treatment.

    Best to you.

    Kongo
    I have appreciated and read your very informative and detailed posts to many members on the board. It seems my questions/concerns have never been in the arena of your discussions. On this one I have a question, and it is a question, not in any way a difference of opinion. To make it somewhat short, I had daVinci surgery 6/05/09 followed by 10 months of need to use PT to quash incontinence. During that time my PSAs were 0.05, 0.05, 0.05 (first ultrasensitive test), and then 0.07 (also ultrasensitive). They were roughly three month intervals. Well, with the last test in April, my urologist abandoned the physical therapy route for incontinence, started me on lupron/casodex, set me up for any AUS in May 2010, followed by radiation starting in mid June which I have now finished. In August I had my second (4 month) lupron shot.
    So obviously I am being treated as if the cancer remained post surgery even though my PSA is far below 0.2. It rose ever so slightly, but still rose. From what I am reading in the above discussion, I may be exaggerating my fears with latent cancer in my body. And yes, there is much anxiety with regards to that. If I read you and Skid Row Tom correctly, I may a bit overboard in my fears. I had a PSA last Tuesday (ultrasensitive, no results yet), but that should be zero with the lupron on board. Any comments? Help would be appreciated. Thanks in advance.
  • bdhilton
    bdhilton Member Posts: 846 Member

    PSA scores
    I've also been told that greater than .2 is cause for concern. For what it's worth, following pca surgery, my fist several PSA's were less than .01. These PSA's were performed at Johns Hopkins. Since then, I've had PSA's drawn by my local urologist (different lab). All "local" scores have been reported at less than .1 - undetectable. My next appointment is Nov. 26th. I'm going to ask him if the lab uses a different sensitivity test, if that's the lab's way of reporting scores, or if that's his way of reporting scores to the patient. The magic word here is "undetectable".

    This subject is near and
    This subject is near and dear to me. I read every study on the benefit on biochemical control of delayed salvage or adjunct radiotherapy with guys with pathologically involved seminal vesicles and positive margins after radical prostatectomy…and from what I read you are correct that .2 seem to be the max elevation for benefit with salvage radiation…I have also read that you get better results with PSA>1.0 but for sure I am from the “school” of .2 or less…

    Best to all and beat this beast with the 2 things you control, which are diet and exercise….
  • mrspjd
    mrspjd Member Posts: 694 Member
    ob66 said:

    Kongo
    I have appreciated and read your very informative and detailed posts to many members on the board. It seems my questions/concerns have never been in the arena of your discussions. On this one I have a question, and it is a question, not in any way a difference of opinion. To make it somewhat short, I had daVinci surgery 6/05/09 followed by 10 months of need to use PT to quash incontinence. During that time my PSAs were 0.05, 0.05, 0.05 (first ultrasensitive test), and then 0.07 (also ultrasensitive). They were roughly three month intervals. Well, with the last test in April, my urologist abandoned the physical therapy route for incontinence, started me on lupron/casodex, set me up for any AUS in May 2010, followed by radiation starting in mid June which I have now finished. In August I had my second (4 month) lupron shot.
    So obviously I am being treated as if the cancer remained post surgery even though my PSA is far below 0.2. It rose ever so slightly, but still rose. From what I am reading in the above discussion, I may be exaggerating my fears with latent cancer in my body. And yes, there is much anxiety with regards to that. If I read you and Skid Row Tom correctly, I may a bit overboard in my fears. I had a PSA last Tuesday (ultrasensitive, no results yet), but that should be zero with the lupron on board. Any comments? Help would be appreciated. Thanks in advance.

    ultrasensitive PSA
    I thought the following was an interesting explanation of ultrasensitive PSA testing (3 decimal places). It's taken verbatim from a portion of part 2 of a 2-part 2005 article titled "Using PSA Intelligently" on the PCRI website:
    http://www.prostate-cancer.org/education/preclin/McDermed_Using_PSA_Intelligently2.html

    "What is an Ultrasensitive PSA Assay?
    The analytical sensitivity of an assay (also referred to as the detection limit) is defined as the lowest concentration of the measured analyte that can be distinguished from the zero control. The Yang Pros- Check® and Hybritech Tandem-R® assays, used clinically back in the late 1980s, were the first commercial immunoassays for PSA. These first-generation PSA assays were manually performed radioimmunometric test methods and possessed analytical sensitivities of 0.3 to 0.6 ng/mL.

    Using the Yang assay as an example, patient values that were below the detection limit for the assay were reported as < 0.3 ng/mL, but could be anywhere between zero and 0.29 ng/mL. Given the high degree of error for PSA measurements approaching the detection limit of such assays, an accurate, reproducible patient result could not be assured unless the PSA level was as high as 0.6 to 0.8 ng/mL.16 This higher value is called an assay’s “functional sensitivity,” which is defined as the lowest concentration measurable with an assay where the coefficient of variation is less than 20%.

    Second-generation PSA assays were developed in the mid-1990s and offered roughly a 10-fold improvement in analytical sensitivity, with detection limits of 0.03 to 0.07 ng/mL, depending upon the manufacturer’s claims. Automated immunoassay analyzers, which reduce the inherent errors associated with manual testing, also began to be introduced during this same time frame. In order to differentiate these second-generation PSA assays from the less sensitive Pros-Check® and Tandem-R® methods, the terms hypersensitive and ultrasensitive were often used to describe these assays. Although more sensitive from an analytical standpoint, second-generation PSA assays possess a functional sensitivity of 0.1 to 0.2 ng/mL.

    The first third-generation PSA assay was introduced into the U.S. market in 1997 by DPC. This assay offers an additional 10-fold improvement in low-end analytical sensitivity, with a claimed detection limit of 0.003 ng/mL, and a functional sensitivity of 0.01 ng/mL. Recognizing the clinical value of third-generation sensitivity, other manufacturers have introduced more sensitive versions of their own PSA tests."
  • Kongo
    Kongo Member Posts: 1,166 Member
    ob66 said:

    Kongo
    I have appreciated and read your very informative and detailed posts to many members on the board. It seems my questions/concerns have never been in the arena of your discussions. On this one I have a question, and it is a question, not in any way a difference of opinion. To make it somewhat short, I had daVinci surgery 6/05/09 followed by 10 months of need to use PT to quash incontinence. During that time my PSAs were 0.05, 0.05, 0.05 (first ultrasensitive test), and then 0.07 (also ultrasensitive). They were roughly three month intervals. Well, with the last test in April, my urologist abandoned the physical therapy route for incontinence, started me on lupron/casodex, set me up for any AUS in May 2010, followed by radiation starting in mid June which I have now finished. In August I had my second (4 month) lupron shot.
    So obviously I am being treated as if the cancer remained post surgery even though my PSA is far below 0.2. It rose ever so slightly, but still rose. From what I am reading in the above discussion, I may be exaggerating my fears with latent cancer in my body. And yes, there is much anxiety with regards to that. If I read you and Skid Row Tom correctly, I may a bit overboard in my fears. I had a PSA last Tuesday (ultrasensitive, no results yet), but that should be zero with the lupron on board. Any comments? Help would be appreciated. Thanks in advance.

    ob
    First, I appreciate your question but please realize I have not had to face the same issues you have and having it be personal certainly changes your perspective on things.

    First, my general feeling is to always second guess and question all doctors, even the ones you love. For the most part they don't go through the same anxieties as we do and they have a much different perspective than that of the patient. And they all have a very vested interest in getting you to proceed with the treatment they recommend.

    I do know that Lupron and Casodex will have the effect of significantly lowering your testosterone level as well as you libido and other things such as potential breast enlargement, hot flashes, and so forth. If you eliminate the testosterone (except for the small amount that comes from the adrenal glands) you basically shut down PCa. Since prostate cancer has a doubling time of nearly three years, it would seem to me that if you go the HT route, you should commit for the normal life cycle of a prostate cell.

    It seems to me that your PSA readings are significantly below what is generally considered a PCa recurrence which is the 0.2 ng/ml level. Also, many prostate cancers are so slow growing that even if it recurs it may not affect your long term prognosis. At the stage your numbers suggest, it is microscopic and probably not in the seminal vesicules or lymph nodes. If it was slow growing before, it is probably slow growing now. Factoring your age and the normal histology of prostate cancer, odds are that something else will send you to the angels.

    Most doctors look at PSA doubling time and PSA velocity following RP and from your readings, the cancer isn't going anywhere so why is the doctor taking these actions? That is only a question that your doctor can answer and you have to be satisfied with.

    I am sorry but I don't recall your history on this as to what your pre-treatment statistics were, our your post RP pathology. If you have had an AUS implanted, I suspect that you have suffered greatly from incontinence after surgery and I hope that procedure is bringing you some relief.

    Over the weekend I read a fascinating book..."Invasion of the Prostate Snatchers" which alternated viewpoints in every other chapter between the patient and the urologist. You may wish to go to amazon.com and get it as it has a lot of useful information about recurrence of PCa after treatment. Some of the patient stuff is rather weird as this guy who was on AS for over 20 years tried a number of out of the mainstream treatments but overall it is well written and provides a great perspective on our disease. If I were in the situation where my cancer appeared to be coming back, I would not panic and subscribe to a protocol that was contrary to what I felt was an acceptable lifestyle. But of course, that is a decison we all have to make individually.

    Bottom line, your PSA velocity and doubling time is negligible. The difference between 0.05 and 0.07 is well with the standard deviation of the sensitive PSA testing criteria. I would have my doctors explain what it is that they are looking for and what they hope to accomplish with their suggested treatments and what affect that would have on your quality of life, which has already been through the wringer.

    I would also seek a second opinion. While most doctors would suggest HT and IMRT following PCa recurrence, I don't think you've yet passed that threshold. Even if you did pass that threshold, is the affect on your quality of life and long term prognosis worth the near term anxiety? Only you can answer that question but from an acutarial perspective, I think that either radiation or RP treatment over the long haul probably only gives the average guy an extra 1 or two months life over doing nothing. I might do the numbers on that sometime as I took a lot of statistics in college, but PCa is one of those types of cancers where doing nothing, even if it recurs following treatment, may not be a bad way to go.

    I'm sorry if I've rambled a bit here but I do hope you raise your concerns with more than one doctor to get a balanced opinion.

    Hope this has helped and not added to your consternation.

    p.s. I would also seriously consider diet and other lifestyle choices that can affect cancer growth. Many studies show that dairy and red meat produce IGF (insulin growth factors)that fuel cancer growth. I belive that once a man seeks treatment, he should also change his lifestyle to reduce those contributing factors that may have played a major role in starting the cancer to begin with. Not sure where you are diet wise, but a cancer healthy diet can also **** PSA acceleration, which in your case is an indicator that some residual cancer is still there and may be growing.
  • ob66
    ob66 Member Posts: 227 Member
    Kongo said:

    ob
    First, I appreciate your question but please realize I have not had to face the same issues you have and having it be personal certainly changes your perspective on things.

    First, my general feeling is to always second guess and question all doctors, even the ones you love. For the most part they don't go through the same anxieties as we do and they have a much different perspective than that of the patient. And they all have a very vested interest in getting you to proceed with the treatment they recommend.

    I do know that Lupron and Casodex will have the effect of significantly lowering your testosterone level as well as you libido and other things such as potential breast enlargement, hot flashes, and so forth. If you eliminate the testosterone (except for the small amount that comes from the adrenal glands) you basically shut down PCa. Since prostate cancer has a doubling time of nearly three years, it would seem to me that if you go the HT route, you should commit for the normal life cycle of a prostate cell.

    It seems to me that your PSA readings are significantly below what is generally considered a PCa recurrence which is the 0.2 ng/ml level. Also, many prostate cancers are so slow growing that even if it recurs it may not affect your long term prognosis. At the stage your numbers suggest, it is microscopic and probably not in the seminal vesicules or lymph nodes. If it was slow growing before, it is probably slow growing now. Factoring your age and the normal histology of prostate cancer, odds are that something else will send you to the angels.

    Most doctors look at PSA doubling time and PSA velocity following RP and from your readings, the cancer isn't going anywhere so why is the doctor taking these actions? That is only a question that your doctor can answer and you have to be satisfied with.

    I am sorry but I don't recall your history on this as to what your pre-treatment statistics were, our your post RP pathology. If you have had an AUS implanted, I suspect that you have suffered greatly from incontinence after surgery and I hope that procedure is bringing you some relief.

    Over the weekend I read a fascinating book..."Invasion of the Prostate Snatchers" which alternated viewpoints in every other chapter between the patient and the urologist. You may wish to go to amazon.com and get it as it has a lot of useful information about recurrence of PCa after treatment. Some of the patient stuff is rather weird as this guy who was on AS for over 20 years tried a number of out of the mainstream treatments but overall it is well written and provides a great perspective on our disease. If I were in the situation where my cancer appeared to be coming back, I would not panic and subscribe to a protocol that was contrary to what I felt was an acceptable lifestyle. But of course, that is a decison we all have to make individually.

    Bottom line, your PSA velocity and doubling time is negligible. The difference between 0.05 and 0.07 is well with the standard deviation of the sensitive PSA testing criteria. I would have my doctors explain what it is that they are looking for and what they hope to accomplish with their suggested treatments and what affect that would have on your quality of life, which has already been through the wringer.

    I would also seek a second opinion. While most doctors would suggest HT and IMRT following PCa recurrence, I don't think you've yet passed that threshold. Even if you did pass that threshold, is the affect on your quality of life and long term prognosis worth the near term anxiety? Only you can answer that question but from an acutarial perspective, I think that either radiation or RP treatment over the long haul probably only gives the average guy an extra 1 or two months life over doing nothing. I might do the numbers on that sometime as I took a lot of statistics in college, but PCa is one of those types of cancers where doing nothing, even if it recurs following treatment, may not be a bad way to go.

    I'm sorry if I've rambled a bit here but I do hope you raise your concerns with more than one doctor to get a balanced opinion.

    Hope this has helped and not added to your consternation.

    p.s. I would also seriously consider diet and other lifestyle choices that can affect cancer growth. Many studies show that dairy and red meat produce IGF (insulin growth factors)that fuel cancer growth. I belive that once a man seeks treatment, he should also change his lifestyle to reduce those contributing factors that may have played a major role in starting the cancer to begin with. Not sure where you are diet wise, but a cancer healthy diet can also **** PSA acceleration, which in your case is an indicator that some residual cancer is still there and may be growing.

    Thanks Kongo
    As always, a beautifully written, lengthy, well thought out response. I feel badly that I did not give you more information in advance after seeing how thorough your response was. My main concern was the 0.02 elevation in PSA as related to your discussion with others on this thread, so I did not add all my details.

    My pre-surgical Gleason was 7, post surgical an 8. There was seminal vesicle involvement on the right side (removed with surgery). There was extensive perineural involvement with the neoplasm confined within the prostatic capsule and surgical margins. Apex, base, and anterior lobe not involved by neoplasm. Right and left pelvic lymph nodes negative for metastatic carcinoma. Stage T3bNOMX.

    As you can see from the additional info that I did not include earlier, there is reason for extreme caution in my case. This I understand very well. What rang my bell in your conversations with others above, was the reality of my PSA increase, even though small. In light of the additional info I have included here are you still as optimistic with my slight increase, or possibly less so as is the prognosis I understand. Thanking all in advance. Bob
  • bdhilton
    bdhilton Member Posts: 846 Member
    ob66 said:

    Thanks Kongo
    As always, a beautifully written, lengthy, well thought out response. I feel badly that I did not give you more information in advance after seeing how thorough your response was. My main concern was the 0.02 elevation in PSA as related to your discussion with others on this thread, so I did not add all my details.

    My pre-surgical Gleason was 7, post surgical an 8. There was seminal vesicle involvement on the right side (removed with surgery). There was extensive perineural involvement with the neoplasm confined within the prostatic capsule and surgical margins. Apex, base, and anterior lobe not involved by neoplasm. Right and left pelvic lymph nodes negative for metastatic carcinoma. Stage T3bNOMX.

    As you can see from the additional info that I did not include earlier, there is reason for extreme caution in my case. This I understand very well. What rang my bell in your conversations with others above, was the reality of my PSA increase, even though small. In light of the additional info I have included here are you still as optimistic with my slight increase, or possibly less so as is the prognosis I understand. Thanking all in advance. Bob

    Ob66…
    our post surgery

    Ob66…
    our post surgery results are pretty close including the right SVI except my Gleason was a 4+3 (I also have one positive margin)…. My oncologist does not use the ultra sensitive PSA test and I get tested every 90 days. My next test date is September 22 and as in the last 2 tests I am somewhat anxious but then again worrying is not going to help…easier said than done

    I elected not to do the adjunct radiation as I believe it is” overkill” but I will seriously start considered radiation when I get a reading at .1 and start treatment before the magic .2… Hey I could go the next 30 years with this beast still asleep or it could rear its ugly head at anytime…. I hate the week or so before these tests…..

    Best to all
  • Kongo
    Kongo Member Posts: 1,166 Member
    ob66 said:

    Thanks Kongo
    As always, a beautifully written, lengthy, well thought out response. I feel badly that I did not give you more information in advance after seeing how thorough your response was. My main concern was the 0.02 elevation in PSA as related to your discussion with others on this thread, so I did not add all my details.

    My pre-surgical Gleason was 7, post surgical an 8. There was seminal vesicle involvement on the right side (removed with surgery). There was extensive perineural involvement with the neoplasm confined within the prostatic capsule and surgical margins. Apex, base, and anterior lobe not involved by neoplasm. Right and left pelvic lymph nodes negative for metastatic carcinoma. Stage T3bNOMX.

    As you can see from the additional info that I did not include earlier, there is reason for extreme caution in my case. This I understand very well. What rang my bell in your conversations with others above, was the reality of my PSA increase, even though small. In light of the additional info I have included here are you still as optimistic with my slight increase, or possibly less so as is the prognosis I understand. Thanking all in advance. Bob

    Still Optimistic
    ob,

    Given that your apparent PSA velocity and doubling time appears to be low I would still be very optimistic. But I would also be religious about verifying PSA scores on a very regular basis and if that began to change I would seriously consider follow-on treatment.

    One question I would ask your doctor would be the liklihood that the residual cancer producing PSA is highly aggressive or slow growing. Given your pathology, you appear to have a more aggressive form of PCa but the relatively low PSA readings would suggest otherwise. On the other hand, there are papers which suggest that recurring PCa cannot be easily correlated to post RP pathology.

    As I understand it, about 65% of patients who have a rise in PSA after RP develop matastatic cancer within 10 years and the mean survival time after this condition is about six years. You may wish to read: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646889/ that discusses this in detail. From the way I read it, even if the PSA continues to rise and you do nothing your would have a mean life expectancy of about 16-17 years. Not knowing how old you are now that may or may not be a reasonable expectation.

    Of course, should the PSA rise I am sure you will find a way to treat it while giving consideration to your kidney condition which would improve your odds even further. But we all know that when the numbers work against us, it's 100%.

    As Mark Twain said: There are lies, damn lies, and statistics.

    I think BD's notion of how to deal with this uncertainty is right on the mark. Watch it closely but avoid doing anything unless it seems to be coming after you. Kind of like the Hippocratic philosophy of first, do no harm. In any event I would remain optimistic, calculate PSA velocity and PSA doubling times, understand how HT or other radiation might be administered without damaging your kidney, and pepper your physician to death with questions so that you understand exactly what it is you're looking for and can expect. If you're not happy with your medical team, I wouldn't hesitate a moment to trade them in for one your were more comfortable with.

    Hope this helps.
  • bdhilton
    bdhilton Member Posts: 846 Member
    ob66 said:

    Thanks Kongo
    As always, a beautifully written, lengthy, well thought out response. I feel badly that I did not give you more information in advance after seeing how thorough your response was. My main concern was the 0.02 elevation in PSA as related to your discussion with others on this thread, so I did not add all my details.

    My pre-surgical Gleason was 7, post surgical an 8. There was seminal vesicle involvement on the right side (removed with surgery). There was extensive perineural involvement with the neoplasm confined within the prostatic capsule and surgical margins. Apex, base, and anterior lobe not involved by neoplasm. Right and left pelvic lymph nodes negative for metastatic carcinoma. Stage T3bNOMX.

    As you can see from the additional info that I did not include earlier, there is reason for extreme caution in my case. This I understand very well. What rang my bell in your conversations with others above, was the reality of my PSA increase, even though small. In light of the additional info I have included here are you still as optimistic with my slight increase, or possibly less so as is the prognosis I understand. Thanking all in advance. Bob

    Ob66 and lew_in_mariettaDr
    Ob66 and lew_in_marietta

    Dr Catalona has some excellent studies on this subject go to http://www.drcatalona.com/default.asp then click on “Dr Catalona’s Articles” and "Qwest Articles" tab….
    You can also just go to www.pubmed.com and search for the most recent medical studies in general
  • mrspjd
    mrspjd Member Posts: 694 Member
    ob66 said:

    Thanks Kongo
    As always, a beautifully written, lengthy, well thought out response. I feel badly that I did not give you more information in advance after seeing how thorough your response was. My main concern was the 0.02 elevation in PSA as related to your discussion with others on this thread, so I did not add all my details.

    My pre-surgical Gleason was 7, post surgical an 8. There was seminal vesicle involvement on the right side (removed with surgery). There was extensive perineural involvement with the neoplasm confined within the prostatic capsule and surgical margins. Apex, base, and anterior lobe not involved by neoplasm. Right and left pelvic lymph nodes negative for metastatic carcinoma. Stage T3bNOMX.

    As you can see from the additional info that I did not include earlier, there is reason for extreme caution in my case. This I understand very well. What rang my bell in your conversations with others above, was the reality of my PSA increase, even though small. In light of the additional info I have included here are you still as optimistic with my slight increase, or possibly less so as is the prognosis I understand. Thanking all in advance. Bob

    ob66
    Bob,
    Great questions and discussion of T3 PCa. As you are aware, pjd took a different approach in his tx decision for his T3 PCa since he did not elect RP as a primary tx (no right or wrong decision here, since each decision is a personal one that you have to believe will be right for you and your lifestyle.) IMHO, I think you made the right decision in following your docs advice for agressively treating the PCa as your PSA rose after RP. Studies have shown that ADT/HT (Androgen Deprivation Therapy/Hormone Therapy) in conjuction with the RT can be a more successful tx than either used alone in more agressive locally advanced PCa. Another thing to consider (and talk to your doc about) since you so recently finished your IMRT is the PSA Bounce effect...after RT, it will take time for the PSA to settle down, even though it could show a rise now. Wondering, if you know, what total Gy you received in your IG/IMRT & over how many sessions? In addition to the prostate bed, did they include additional nodes in the radiation field? How are you doing on the ADT and have you decided how long you might stay on it? Also, hoping the AUS activation was a success and resolved those issues. Hope these questions are not too personal. Thanks.
  • Kongo
    Kongo Member Posts: 1,166 Member
    mrspjd said:

    ob66
    Bob,
    Great questions and discussion of T3 PCa. As you are aware, pjd took a different approach in his tx decision for his T3 PCa since he did not elect RP as a primary tx (no right or wrong decision here, since each decision is a personal one that you have to believe will be right for you and your lifestyle.) IMHO, I think you made the right decision in following your docs advice for agressively treating the PCa as your PSA rose after RP. Studies have shown that ADT/HT (Androgen Deprivation Therapy/Hormone Therapy) in conjuction with the RT can be a more successful tx than either used alone in more agressive locally advanced PCa. Another thing to consider (and talk to your doc about) since you so recently finished your IMRT is the PSA Bounce effect...after RT, it will take time for the PSA to settle down, even though it could show a rise now. Wondering, if you know, what total Gy you received in your IG/IMRT & over how many sessions? In addition to the prostate bed, did they include additional nodes in the radiation field? How are you doing on the ADT and have you decided how long you might stay on it? Also, hoping the AUS activation was a success and resolved those issues. Hope these questions are not too personal. Thanks.

    I apologize
    ob,

    It wasn't until I read mrspjd post and went back and reread your initial question on this area that I realized you had already had IMRT following the RP. I guess I zeroed in on your kidney issue with respect to more radiation and misunderstood that you had already had it.

    In that case, mrspjd brings up a very cogent point about the PSA bounce, which is a very common occurence and happens at about the 1 year to 18 month point then settles back down to a nadir.

    My personal feeling is that I would have waited to see what happened to the PSA after RP (as BD is doing) rather than jump into an aggressive treatment therapy but I certainly understand why you would want to do that given your pre and post RP pathology. As mrs points out, this is a very personal decision and I don't believe there is a right or wrong answer here.

    Having said that along with my mea culpas, I still think what I wrote in earlier posts gives you plenty of reason to be very optimistic. Your treatment course suggests a very high likilihood that even if your PCa should matastisize (and I think that's a fairly low probability) it will likely be significantly delayed.

    But we all know that none of our doctors are giving us any kind of money back guarantee on any of this and something, one way or the other, is going to get all of us sooner or later. So while we may all be joining the great PCa reunion forum in the sky one day, we will all arrive at different times. Not trying to be macabre here or suggest that you ought to start shopping for funeral plots or anything...just that the important thing is that once we've made our choices is to live with them as best we can and try to make each day special while monitoring progress and taking steps prudent for our situation. I suspect you have lots and lots of special days ahead.
  • 142
    142 Member Posts: 169
    < 0.1
    I have three docs involved, and three very contradicting opinions.

    1) Uro / (did my) diDaVinci surgeon - does not do anything but standard, using Bostwick, so <0.1 is "undetectable".
    2) Rad. Oncologist - ordered "ultrasensitive" from the lab my insurance requires - got a <0.01 "undetectable",
    3) GP will order what I ask for, but is limited to the lab used by 2). Won't get a test from him until October.

    In all cases I hear from the Dr. that the < is the critical factor.

    From them, with this setup, I would be concerned with 0.1 as a result (i.e. no < ). Consult your doc, perhaps ask for a copy of the report - what is said on the phone might not reflect the real printed copy. My first report was a 0.1 until I got a copy of the printed report ( < character was overlooked).
  • ob66
    ob66 Member Posts: 227 Member
    mrspjd said:

    ob66
    Bob,
    Great questions and discussion of T3 PCa. As you are aware, pjd took a different approach in his tx decision for his T3 PCa since he did not elect RP as a primary tx (no right or wrong decision here, since each decision is a personal one that you have to believe will be right for you and your lifestyle.) IMHO, I think you made the right decision in following your docs advice for agressively treating the PCa as your PSA rose after RP. Studies have shown that ADT/HT (Androgen Deprivation Therapy/Hormone Therapy) in conjuction with the RT can be a more successful tx than either used alone in more agressive locally advanced PCa. Another thing to consider (and talk to your doc about) since you so recently finished your IMRT is the PSA Bounce effect...after RT, it will take time for the PSA to settle down, even though it could show a rise now. Wondering, if you know, what total Gy you received in your IG/IMRT & over how many sessions? In addition to the prostate bed, did they include additional nodes in the radiation field? How are you doing on the ADT and have you decided how long you might stay on it? Also, hoping the AUS activation was a success and resolved those issues. Hope these questions are not too personal. Thanks.

    Thanks to all
    mrs, Kongo, bdhilton, 142-----------Thank you all so much for your input. mrs, My AUS is working unbelievably well. Not sure that the issues are ever resolved for you must activate the appliance each time you pass urine (a constant reminder). However, the reminder is exponentially better than the constant reminder of 8-10 pads daily. It really does feel good, and if I could be a poster child to anyone that considers it, I would be. Any questions anyone has in this area I would be happy to answer. Also, mrs, I had 37 sessions and do not know the Gy delivered via IMRT. Also, the ADT is a pain with the hot flashes but they are not all consuming (that is until the little buggers happen). I will have 1 year of lupron in my understanding. Tomorrow, or the next day I should get my PSA result, but it should be good for I have been on lupron since April 12. It better be good. But all of you are so kind to take your time. I feel better about my outlook, although we all know that is up for grabs. And Kongo, I am 69, so if I get anywhere near 16-17 years I will have outlived my PCa in my mind. Hoping for same. Thanks again, all of you.
  • muttsrule
    muttsrule Member Posts: 52
    142 said:

    < 0.1
    I have three docs involved, and three very contradicting opinions.

    1) Uro / (did my) diDaVinci surgeon - does not do anything but standard, using Bostwick, so <0.1 is "undetectable".
    2) Rad. Oncologist - ordered "ultrasensitive" from the lab my insurance requires - got a <0.01 "undetectable",
    3) GP will order what I ask for, but is limited to the lab used by 2). Won't get a test from him until October.

    In all cases I hear from the Dr. that the < is the critical factor.

    From them, with this setup, I would be concerned with 0.1 as a result (i.e. no < ). Consult your doc, perhaps ask for a copy of the report - what is said on the phone might not reflect the real printed copy. My first report was a 0.1 until I got a copy of the printed report ( < character was overlooked).</p>

    0.01
    Just to throw in my 0.01 cents worth, this was my score yesterday at one year out. Cryosurgery. Congratulatory gifts exceeding $10,000 in value are most welcome.
  • ob66
    ob66 Member Posts: 227 Member
    ob66 said:

    Thanks to all
    mrs, Kongo, bdhilton, 142-----------Thank you all so much for your input. mrs, My AUS is working unbelievably well. Not sure that the issues are ever resolved for you must activate the appliance each time you pass urine (a constant reminder). However, the reminder is exponentially better than the constant reminder of 8-10 pads daily. It really does feel good, and if I could be a poster child to anyone that considers it, I would be. Any questions anyone has in this area I would be happy to answer. Also, mrs, I had 37 sessions and do not know the Gy delivered via IMRT. Also, the ADT is a pain with the hot flashes but they are not all consuming (that is until the little buggers happen). I will have 1 year of lupron in my understanding. Tomorrow, or the next day I should get my PSA result, but it should be good for I have been on lupron since April 12. It better be good. But all of you are so kind to take your time. I feel better about my outlook, although we all know that is up for grabs. And Kongo, I am 69, so if I get anywhere near 16-17 years I will have outlived my PCa in my mind. Hoping for same. Thanks again, all of you.

    PSA Today
    Came back ZERO with ultrasensitive after 15 months and .05,.05,.05,.07....Have been on lupron since April 12 (after the last PSA at .07) so the meaning of 0 is not as great because of the lupron, but it sure beats having any positive reading while on the lupron. Finally, something in the way of percentages goes my way. I wish the same to all of you and thanks again. Bob
  • Kongo
    Kongo Member Posts: 1,166 Member
    ob66 said:

    PSA Today
    Came back ZERO with ultrasensitive after 15 months and .05,.05,.05,.07....Have been on lupron since April 12 (after the last PSA at .07) so the meaning of 0 is not as great because of the lupron, but it sure beats having any positive reading while on the lupron. Finally, something in the way of percentages goes my way. I wish the same to all of you and thanks again. Bob

    Great Score
    ob66,

    That is a great test result and I am sure you are relieved but as you point out, the Lupron is likely impacting the PSA reading significantly.

    How long is the doctor going to keep you on Lupron. I have read that for many men, Lupron and similar drugs lose their effectiveness over time. To me it seems that the critical aspect of any hormone treatment (although there are many who post here that know a lot more about it than I do) is the length of time it is administered. I understand that most prostate cancer cells have a median life span of about three years. It would seem to me that you would want to stay on HT over the liftime of these cancer cells to make sure they couldn't get the testosterone they need to reproduce. This may be an oversimplification of the process but my suspicion is that when HT is administered as an on again off again option depending on PSA that we're only treating the symptom of the cancer (the PSA) and not the actual cancer cells that will continue to grow and spread if they're given the chance.

    Of course, being on HT for three years has a lot of potential downsides to it.

    I'm wondering what your thoughts on this are.
  • ob66
    ob66 Member Posts: 227 Member
    Kongo said:

    Great Score
    ob66,

    That is a great test result and I am sure you are relieved but as you point out, the Lupron is likely impacting the PSA reading significantly.

    How long is the doctor going to keep you on Lupron. I have read that for many men, Lupron and similar drugs lose their effectiveness over time. To me it seems that the critical aspect of any hormone treatment (although there are many who post here that know a lot more about it than I do) is the length of time it is administered. I understand that most prostate cancer cells have a median life span of about three years. It would seem to me that you would want to stay on HT over the liftime of these cancer cells to make sure they couldn't get the testosterone they need to reproduce. This may be an oversimplification of the process but my suspicion is that when HT is administered as an on again off again option depending on PSA that we're only treating the symptom of the cancer (the PSA) and not the actual cancer cells that will continue to grow and spread if they're given the chance.

    Of course, being on HT for three years has a lot of potential downsides to it.

    I'm wondering what your thoughts on this are.

    Lupron longevity
    Kongo, Lupron was more or less cast upon me with the need to stop the progression of multiplication of PCa cells while I had the AUS surgery and then RT. I just recently had the second 4 month injection. With the issues you raise I will be studying the best amount of time to be taking lupron in my particular situation. My understanding is that the lupron counters the food supply (testosterone) for the PCa cells, and does not "kill" PCa cells per se. The effects of RT do take time (post treatment) to fully exert their benefits, thus the extension of HT time for protection and reduction while this is hopefully going on.

    The "lifetime of the cancer cells" raised the question whether there will be a benefit to continue that protection, or if HT therapy would better be saved if there are future raises in PSA. These questions I do not have answers for at this time, but are very interesting and worth study. There are a lot of people, myself included, who must be very thankful for your well reasoned posts. Thank you. Bob
  • Jerry Mac
    Jerry Mac Member Posts: 21
    Cancer was downgraded
    1. Negatvie Margins
    2. Seminal Vesicles not identified
    3. Bladder Neck invasion not identified
    4. extraprostatic extension not identified
    5. lymph node negative
    6. tumor quantitation 5% in both lobes: Gleason 6 and 7 4+3
    7. Stage PT2C

    Follow up PSA May 16, 2018 0.18

    Is the PSA a bad sign? Please provide your opinion