Post SRT failure :-(

bdhilton
bdhilton Member Posts: 846 Member

 

My journey started in March of 2010 with RP with Dr. Catalona (age 54).  Post RP I had an immediate 0.0 PSA for about 18 months (note: post RP Gleason 4+3, positive margins, SV involvement, neg lymph) and began to see a rise until it hit 0.5 in April of 2015.  I had salvage RT with 6 months of Lupron that was concluded in October 2015, which resulted in an immediate 0.0 for 3.5 years until last week with a reading of 0.2.

 

Any insight from folks with similar history…

 

Many thanks and life has been good

 

Comments

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Difficult call

    Hi there,

    It is very difficult to say what will happen next.
    Most doctors will wait and see what the next reading is and maybe the one after that, that will give them a rough PSA doubling rate to use to assess the nature of the cancer.
    It is close to or below the very lower limit for scans but if it continues to climb then it is possible that they can use a scan to try and find out if it is a localised tumour that can be treated with spot radiation.
    Intermittent ADT could offer control for some time.
    It is not an immediate threat; in a worse case, controllable for five, maybe ten or fifteen years, best case it may be possible to cure it completely.
    One of the worst and best aspects of prostate cancer is the fact that it is a slow moving disease.

    Best wishes,

    Georges

  • bdhilton
    bdhilton Member Posts: 846 Member
    edited April 2019 #3

    Difficult call

    Hi there,

    It is very difficult to say what will happen next.
    Most doctors will wait and see what the next reading is and maybe the one after that, that will give them a rough PSA doubling rate to use to assess the nature of the cancer.
    It is close to or below the very lower limit for scans but if it continues to climb then it is possible that they can use a scan to try and find out if it is a localised tumour that can be treated with spot radiation.
    Intermittent ADT could offer control for some time.
    It is not an immediate threat; in a worse case, controllable for five, maybe ten or fifteen years, best case it may be possible to cure it completely.
    One of the worst and best aspects of prostate cancer is the fact that it is a slow moving disease.

    Best wishes,

    Georges

    thanks

    George, thanks for the summary.  Yes, a hard cancer to call...

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Local recurrence

    Hi there,

    Looking at your pathology it is almost certainly a local recurrence at this time eg it is somewhere in the region of the prostatic fossa.
    It poses no immediate risk and it is likely that it can be successfully treated.
    I am sorry that it is so hard to say something definitive.
    Have you got some appointments scheduled with your urologist, etc?

    Best wishes,

    Georges

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Your next step is to verify where cancer hides

    Hilton,

    Welcome back to the forum. I was missing your entries here but was not expecting you to come for such an inquire. I am sorry for knowing about the recurrence. Your disappearance made me think that you did manage cure and just lost interest in the topics of the forum. Many of the old faces have vanished too along the 9 years since I started here. The last breakout of the board (October to January) and loss of entries made some of the guys you know to leave and stop attending too. I still recall when I added wine to your list of diet recommendations. (https://csn.cancer.org/node/208802)

    My treatments follow a similar sequence as those of yours but we have different initial diagnosis in terms on Gleason grades and post RP pathological findings. I am a Gs6 and had no seminal vesicles involvement, and recurrence was declared (PSA=0.42) five month post RP. Your recurrence (PSA=0.5) occur much later at the 5 year milestone. The radiation therapy follow similar protocol with mine at 68Gy in 37 sections and yours (I think) being 62Gy in 37 sections. Am I right?
    Recurrence after RT also happen 3.5 years post the end of administration. That is when I joined the board in 2010, when I started intermittently ADT. For me this has been an incredible journey of almost 19 years of survivorship.

    I agree with Georges opinion above. You may have still a localized affair with the bandit. However, treatments after radicals all tend to be palliative, not curing but extending the period of free biochemical failure. Surely these all involve a series of side effects added to the ones we already got from the radicals. Apart from what we may predict to occur as we age.

    I have been fortunate because the bandit allowed me to be free from any ADT (and its side effects) since 2012. I am still procuring cure via a sort of oligometastatic treatment that uses spot radiation. But I am encountering the problem of the risks of rads over rads as the bandit recurred at the same localized area (the prostate bed) radiated in 2006. This is not a spot but an area which has already received/absorbed the full dose of rays permitted in local tissues. A similar issue could refer to your case but you need firstly to localize the positioning of the bandit to verify any possibility in an oligometastatic treatment. If not ADT, you may check on chemotherapy or immunotherapy using monoclonals (now in clinical trials).

    Even if our cases are similar, they are different and follow different approaches. I started ADT after RT recurrence when the PSA reached 1.0 ng/ml. This was the threshold established by my oncologist for guys with my characteristics. Your doctor would have his own thresholds; however, earlier starts do not mean better outcomes. The PSA=0.2 is pretty low, even if you want to pursue an image study to try locating the bandit. These image exams are now more reliable than 10 years ago using PET with PSMA isotopes that identify at cellular level prostatic metastases. I did a PET F18-choline in Jan 2018 and a PET Ga68 PSMA in Feb 2019. The F18-choline was positive but the 68Ga-PSMA was negative. I believe that the image done with Gallium did not identify a positive target because the bladder (which takes most of the Gallium for excretion) superimposes the area of the prostate bed disturbing a proper reading if the SUV is relatively low (typical of low Gleason grades). The F18-choline doesn't interfere much at the bladder areas so that I take its positive as real. If interested, you can follow my story in the following links;

    https://csn.cancer.org/node/215330

    https://csn.cancer.org/node/253261

    https://csn.cancer.org/node/290854

    https://csn.cancer.org/node/314326

    Your next step is to verify where cancer hides. In such regard, traditional image exams have limits in detection depending on the size of the tumor/lesion (above 7 mm). PET identifies active cells (higher PSA better but minimum PSA=0.5 ng/ml) so that the tracer should be made up of substances that are absorbed by PCa. The best is the PSMA (a protein existing in all prostatic cells) followed by choline (18F or C11), fluciclovine (aiming the amino acid in prostatic cells) and glucose (FDG). The most common tracers in PET exams are the ones used as ligands in radionuclide Gallium 68 (68Ga) and the Fluorine-18 (F18). In the following links you get the details on capabilities;

    https://www.urotoday.com/journal/prostate-cancer-and-prostatic-diseases/107274-the-use-of-pet-ct-in-prostate-cancer-full-text-article.html

    http://jnm.snmjournals.org/content/early/2018/11/01/jnumed.118.218495

    Regarding the Immunotherapy with monoclonals in here;

    https://csn.cancer.org/node/319261

     

    Best wishes in this continuing journey. Tell us more about you and your experiences with diets.

    Welcome back.

    VGama

  • bdhilton
    bdhilton Member Posts: 846 Member

    Your next step is to verify where cancer hides

    Hilton,

    Welcome back to the forum. I was missing your entries here but was not expecting you to come for such an inquire. I am sorry for knowing about the recurrence. Your disappearance made me think that you did manage cure and just lost interest in the topics of the forum. Many of the old faces have vanished too along the 9 years since I started here. The last breakout of the board (October to January) and loss of entries made some of the guys you know to leave and stop attending too. I still recall when I added wine to your list of diet recommendations. (https://csn.cancer.org/node/208802)

    My treatments follow a similar sequence as those of yours but we have different initial diagnosis in terms on Gleason grades and post RP pathological findings. I am a Gs6 and had no seminal vesicles involvement, and recurrence was declared (PSA=0.42) five month post RP. Your recurrence (PSA=0.5) occur much later at the 5 year milestone. The radiation therapy follow similar protocol with mine at 68Gy in 37 sections and yours (I think) being 62Gy in 37 sections. Am I right?
    Recurrence after RT also happen 3.5 years post the end of administration. That is when I joined the board in 2010, when I started intermittently ADT. For me this has been an incredible journey of almost 19 years of survivorship.

    I agree with Georges opinion above. You may have still a localized affair with the bandit. However, treatments after radicals all tend to be palliative, not curing but extending the period of free biochemical failure. Surely these all involve a series of side effects added to the ones we already got from the radicals. Apart from what we may predict to occur as we age.

    I have been fortunate because the bandit allowed me to be free from any ADT (and its side effects) since 2012. I am still procuring cure via a sort of oligometastatic treatment that uses spot radiation. But I am encountering the problem of the risks of rads over rads as the bandit recurred at the same localized area (the prostate bed) radiated in 2006. This is not a spot but an area which has already received/absorbed the full dose of rays permitted in local tissues. A similar issue could refer to your case but you need firstly to localize the positioning of the bandit to verify any possibility in an oligometastatic treatment. If not ADT, you may check on chemotherapy or immunotherapy using monoclonals (now in clinical trials).

    Even if our cases are similar, they are different and follow different approaches. I started ADT after RT recurrence when the PSA reached 1.0 ng/ml. This was the threshold established by my oncologist for guys with my characteristics. Your doctor would have his own thresholds; however, earlier starts do not mean better outcomes. The PSA=0.2 is pretty low, even if you want to pursue an image study to try locating the bandit. These image exams are now more reliable than 10 years ago using PET with PSMA isotopes that identify at cellular level prostatic metastases. I did a PET F18-choline in Jan 2018 and a PET Ga68 PSMA in Feb 2019. The F18-choline was positive but the 68Ga-PSMA was negative. I believe that the image done with Gallium did not identify a positive target because the bladder (which takes most of the Gallium for excretion) superimposes the area of the prostate bed disturbing a proper reading if the SUV is relatively low (typical of low Gleason grades). The F18-choline doesn't interfere much at the bladder areas so that I take its positive as real. If interested, you can follow my story in the following links;

    https://csn.cancer.org/node/215330

    https://csn.cancer.org/node/253261

    https://csn.cancer.org/node/290854

    https://csn.cancer.org/node/314326

    Your next step is to verify where cancer hides. In such regard, traditional image exams have limits in detection depending on the size of the tumor/lesion (above 7 mm). PET identifies active cells (higher PSA better but minimum PSA=0.5 ng/ml) so that the tracer should be made up of substances that are absorbed by PCa. The best is the PSMA (a protein existing in all prostatic cells) followed by choline (18F or C11), fluciclovine (aiming the amino acid in prostatic cells) and glucose (FDG). The most common tracers in PET exams are the ones used as ligands in radionuclide Gallium 68 (68Ga) and the Fluorine-18 (F18). In the following links you get the details on capabilities;

    https://www.urotoday.com/journal/prostate-cancer-and-prostatic-diseases/107274-the-use-of-pet-ct-in-prostate-cancer-full-text-article.html

    http://jnm.snmjournals.org/content/early/2018/11/01/jnumed.118.218495

    Regarding the Immunotherapy with monoclonals in here;

    https://csn.cancer.org/node/319261

     

    Best wishes in this continuing journey. Tell us more about you and your experiences with diets.

    Welcome back.

    VGama

    VGama

    VGama, thanks for the input and welcome back...I would much prefer not to be a member but its nice to see so many that continue to survive...it was nice eating anything I wanted the last few years...I'm back on my pescetarian diet and I'm incorporating 60 grams of RSO oil over the next 90 days...I've been blessed this entire journey and I cant say enough about diet...I'll let you guys know what they tell me next week....thanks for your input!

  • bdhilton
    bdhilton Member Posts: 846 Member
    Update...info needed

    Ok...

    Salvage radiation w/6months lupron Finished 10/2014

    January 2018 PSA <.01

    March 2019 PSA  .204

    July 2919 PSA .207

     

    How do you figure doubling time after salvage with lupron....thxs

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Doubling time

    Hi there,

    To calculate doubling time you need a series of PSA results that show a trend.
    Your PSA rose from January to March but now it does not seem to be going anywhere.
    I think you will have to wait until September, the good news is that it is looking pretty indolent so it could stay doing not much for a while!

    Best wishes,

    Georges

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Are you systemic or have oligometastatic disease?

    Hilton,

    After SRT in guys from failed surgery, the doubling of the PSA has no particular significance for uses in terms of validating the status of a patient or suggested treatment. Surely the PSA is used to identify the progress of the disease which situation diagnosis the patient with systemic disease. In other words, one has lost any possibility on cure. In such cases, treatments tend to be palliative just to extend the period of biochemical survival. The most typical are ADT (that has a vast arsenal of drugs) and chemotherapy. However, there have been considerable improvements in the treatment of systemic PCa via the immune system using monoclonals. There are also therapies using radiopharmaceuticals such as the LU177 that works as direct missiles sent to the cancer where it hides.

    The question is if you are systemic or you still have a possible case of oligometastatic disease. That is what I commented previously in my above post. In your shoes I would firstly to check your present status. If the present recurrence is from cancer at areas not covered in your SRT of 2015, then you may have still a chance at cure with spot radiation.
    On the other end, if you are systemic, then I would suggest you to discuss with your doctor in getting involved in a protocol of intermittent ADT. This is what I am doing. To such cases, oncologists use PSA thresholds to serve as triggers for on and off periods. In my case, I started ADT at a PSA=1.0 ng/ml, then ftert one year in remission levels (PSA<0.05 ng/ml) I stopped taking drugs. That made the PSA to start increasing. The restart of ADT will be when the PSA reaches 2.5 ng/ml for my case but some guys use thresholds of PSA=5.0 or higher at 10.0 as their threshold to restart ADT. Your doctor will have his parameters for your case. Fortunately to me, the cancer has a sluggish advance permitting me to be out of drugs (vacation period) for seven years already.

    Best wishes,

    VGama   

     

     

  • bdhilton
    bdhilton Member Posts: 846 Member

    Doubling time

    Hi there,

    To calculate doubling time you need a series of PSA results that show a trend.
    Your PSA rose from January to March but now it does not seem to be going anywhere.
    I think you will have to wait until September, the good news is that it is looking pretty indolent so it could stay doing not much for a while!

    Best wishes,

    Georges

    Thxs for your input....I

    Thxs for your input....I sincerely appreciate  it...

  • bdhilton
    bdhilton Member Posts: 846 Member

    Are you systemic or have oligometastatic disease?

    Hilton,

    After SRT in guys from failed surgery, the doubling of the PSA has no particular significance for uses in terms of validating the status of a patient or suggested treatment. Surely the PSA is used to identify the progress of the disease which situation diagnosis the patient with systemic disease. In other words, one has lost any possibility on cure. In such cases, treatments tend to be palliative just to extend the period of biochemical survival. The most typical are ADT (that has a vast arsenal of drugs) and chemotherapy. However, there have been considerable improvements in the treatment of systemic PCa via the immune system using monoclonals. There are also therapies using radiopharmaceuticals such as the LU177 that works as direct missiles sent to the cancer where it hides.

    The question is if you are systemic or you still have a possible case of oligometastatic disease. That is what I commented previously in my above post. In your shoes I would firstly to check your present status. If the present recurrence is from cancer at areas not covered in your SRT of 2015, then you may have still a chance at cure with spot radiation.
    On the other end, if you are systemic, then I would suggest you to discuss with your doctor in getting involved in a protocol of intermittent ADT. This is what I am doing. To such cases, oncologists use PSA thresholds to serve as triggers for on and off periods. In my case, I started ADT at a PSA=1.0 ng/ml, then ftert one year in remission levels (PSA<0.05 ng/ml) I stopped taking drugs. That made the PSA to start increasing. The restart of ADT will be when the PSA reaches 2.5 ng/ml for my case but some guys use thresholds of PSA=5.0 or higher at 10.0 as their threshold to restart ADT. Your doctor will have his parameters for your case. Fortunately to me, the cancer has a sluggish advance permitting me to be out of drugs (vacation period) for seven years already.

    Best wishes,

    VGama   

     

     

    VGama...I'm not cured, but

    VGama...I'm not cured, but they told me I was (ha ha)...as always, thxs for the great info...my doc is saying if I have the same  reading on my next test in October then I can do the PSA every 6 months... she also said, when I hit 4.0-10.0 then will figure it out...ha ha

     

    At the end if the day, I've got a better record than my medical team for suppression (cant speak for this time around)...I went 6 years without issues with postsurgery positive margin-SV involvement, Gleason 4+3, bla bla...with diet, exercise and weight management....in 2015 with SRT and Lupron I was PSA free for less than 4 years and had lupron residuals for a good year....I'm back managing my heath, I got complacent with the words "you're  cured"....

     

    Thxs again!

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    The meaning of "cure"

    Hilton,

    The term cured has different meaning in doctors. They use it to say that we are free from symptoms but we want to take it with the meaning that we are free from the disease. Many of them do not even use the term when talking to oncologic patients.

    I recall in our exchanged opinions, one decade ago, discussing about existing treatment methods, which ones haven't changed much today. The word "cure" is still ambiguous in Prostate cancer affairs. No doubts that much improvement has been done towards that goal but nothing has appeared yet to claim such a success.
    The traditional ways in dealing with PCa are still valid and the best means we have to achieve cure as doctors see it. The same practice continues by, either removal of infested flesh (RP) or destroying the cells composing it whole (RT, HIFU, Cryo). Some advancement have been done for the good in understanding how cancerous cells behave and the mechanism behind it that provides survival to those we want to destroy. This is the world of the monoclonals (Noble prize in medicine of 2018) but it means too that we may have another decade of waiting before we read the world CURE with the meaning we like.

    Well, meanwhile, let's enjoy life fully avoiding to the maximum those nasty effects from treatments we know that will not cure us.

    This is the time for a glass of Portuguese Esporao red. Hip Hip Hurray.

    VG

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Running battle

    Hi there,

    You have a very similar case to mine, I also had a 4+3 with marginal and seminal vesicle involvement and that seemed to be that, nothing detectable in the skeleton or internal organs by scanning and the lymph nodes that the surgeon took were clear.
    The bad news is that the cancer will often recur but the good news in cases like ours is that it takes a long time to progress and the metastases are usually in the pelvic area and can be treated with radiation, surgery, etc.
    It will often take many years before metastases appear in the bones and internal organs so it is extremely likely that we will both be here for the lang term, barring that fatal No 9 bus!

    Best wishes,

    Georges

  • bdhilton
    bdhilton Member Posts: 846 Member
    Yes, celebrate the positives!

    Yes, celebrate the positives!  Been blessed for sure.  We've been talking 10 years off and on about our cancer...thxs

  • bdhilton
    bdhilton Member Posts: 846 Member

    Running battle

    Hi there,

    You have a very similar case to mine, I also had a 4+3 with marginal and seminal vesicle involvement and that seemed to be that, nothing detectable in the skeleton or internal organs by scanning and the lymph nodes that the surgeon took were clear.
    The bad news is that the cancer will often recur but the good news in cases like ours is that it takes a long time to progress and the metastases are usually in the pelvic area and can be treated with radiation, surgery, etc.
    It will often take many years before metastases appear in the bones and internal organs so it is extremely likely that we will both be here for the lang term, barring that fatal No 9 bus!

    Best wishes,

    Georges

    Yes George, we are the lucky

    Yes George, we are the lucky ones to be talking about it...