testosterone and PCA? Balance between test/estrogen?

A88M
A88M Member Posts: 22 Member

Recently there has been a paper out of J. Hopkins about Bipolar Testosterone therapy in folks with metastatic Pca.  The study had excellent success with the reported cure of one participant and the decrease in PSA in many.  Also this study from the BJU 

Endogenous and exogenous testosterone and the risk of prostate cancer and increased prostate-specific antigen (PSA) level: a meta-analysis.

Concludes that exogenous testosterone does not effect PSA level and the onset of Pca.  There have also been numerous studies showing that men with lower testosterone levels have worse prognosis.  This adds to the cofusion of the situation where perhaps mens testosterone/ estrogen levels should be optimized to lower PSA and make folks with prostate cancer's quality of lives better...libido/sex drive erection quality?

As someone who is about to turn 45 and has had a failed Robotic Prostatectomy in 8/16 with early biochemical recurrence, rising PSA, and low testosterone I am interested in finding the optimal way to beat this most common disease that has been bizarely under researched, under advocated for (NFL teams wearing PINK shoes for Breat Cancer Awareness), and mismanged on a national scale with folks advocating not testing PSA's as the age of occurance of Pca is getting younger and younger.

Also I am a Medical Doctor so I know what goes on and have seen within my own family the mistreatment, lack of knowledge, hubris, and the herd mind which is all becoming more uniform and less adaptive over time in the medical establishment.

I wish you all the best and respect everyones experience however the fact is the integrity of all MAINSTREAM THINKING MUST BE QUESTIONED.

 

 

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Your next step

    If I read it right, you are reffering to two diferrent studies that may relate to each other, however none of them reported cure of any participant . The JH Bipolar Androgen Therapy (BTA) study refers to the influence of exogenous testosterone in refractory cases on a cohort of patients taking Zytiga or Xtandi as prime therapy. They found continuous responses to the prime drugs after injection of exogenous testosterone. The second study in bold in your post is an European short study checking the influence of exogenous testosterone (TRT) in prostate cancer behaviour as seen on PSA variations.
    Surely some types of cancer respond little to endogenous or exogenous testosterone influences, but the majority of PCa cases since 1940th have shown better results when castration (reducing endogenous testosterone) is administered. Resent studies that led to the approval of hormonal drugs also confirm better results in those that combined chemical castration with the drug in reference. This is the reason that makes doctors to recommend LHRH agonists to pair with more specific drugs. I think that none of them are 100% efficient because it does not address the cancer itself. It interferes with the process in which the cancer is feed. Refractory tendency is expected to occur (soon or later) when the cancer looks for other means for survival.

    I am glad for your sharing information on your PCa case. I wonder what you have decided to do after failed RP. Are you contemplating salvage radiotherapy (SRT)?

    I also had failed RP from the beginning in 2000. The first PSA two weeks after RP was 0.12 and one month later had increased to 0.18 ng/ml. I never got to remission levels. The third PSA of 0.24 confirmed recurrence. At the time I did lots of researches and consulted many top specialists each agreeing that I had micrometastases. My follow-up treatment was salvage radiotherapy (SRT). I wonder what is your choice.

    One note regarding the testosterone levels in practice;
    Low testosterone are levels lower than 250 ng/dL,
    Castration testosterone are levels lower than 50 ng/dL
    In HT treatments oncologists try keeping the testosterone lower than 30 ng/dL and some still lower below 20 ng/dL.

    Hormonal therapies do not exclusively involve keeping the patients in castration. Many other ways are used when testosterone has no influence in the case. Via a genetic testing it is possible to verify which drugs are more efficient in treating certain cases. You could start your next step by investigating the genetics in your PCa. I would recommend you to get the opinion of an oncologist specialist in target medications.

    Best wishes and luck in your journey.

    VGama

  • A88M
    A88M Member Posts: 22 Member
    edited January 2017 #3

    Your next step

    If I read it right, you are reffering to two diferrent studies that may relate to each other, however none of them reported cure of any participant . The JH Bipolar Androgen Therapy (BTA) study refers to the influence of exogenous testosterone in refractory cases on a cohort of patients taking Zytiga or Xtandi as prime therapy. They found continuous responses to the prime drugs after injection of exogenous testosterone. The second study in bold in your post is an European short study checking the influence of exogenous testosterone (TRT) in prostate cancer behaviour as seen on PSA variations.
    Surely some types of cancer respond little to endogenous or exogenous testosterone influences, but the majority of PCa cases since 1940th have shown better results when castration (reducing endogenous testosterone) is administered. Resent studies that led to the approval of hormonal drugs also confirm better results in those that combined chemical castration with the drug in reference. This is the reason that makes doctors to recommend LHRH agonists to pair with more specific drugs. I think that none of them are 100% efficient because it does not address the cancer itself. It interferes with the process in which the cancer is feed. Refractory tendency is expected to occur (soon or later) when the cancer looks for other means for survival.

    I am glad for your sharing information on your PCa case. I wonder what you have decided to do after failed RP. Are you contemplating salvage radiotherapy (SRT)?

    I also had failed RP from the beginning in 2000. The first PSA two weeks after RP was 0.12 and one month later had increased to 0.18 ng/ml. I never got to remission levels. The third PSA of 0.24 confirmed recurrence. At the time I did lots of researches and consulted many top specialists each agreeing that I had micrometastases. My follow-up treatment was salvage radiotherapy (SRT). I wonder what is your choice.

    One note regarding the testosterone levels in practice;
    Low testosterone are levels lower than 250 ng/dL,
    Castration testosterone are levels lower than 50 ng/dL
    In HT treatments oncologists try keeping the testosterone lower than 30 ng/dL and some still lower below 20 ng/dL.

    Hormonal therapies do not exclusively involve keeping the patients in castration. Many other ways are used when testosterone has no influence in the case. Via a genetic testing it is possible to verify which drugs are more efficient in treating certain cases. You could start your next step by investigating the genetics in your PCa. I would recommend you to get the opinion of an oncologist specialist in target medications.

    Best wishes and luck in your journey.

    VGama

    salvage radiation in my future

    Thanks for the insight.  I am scheduled for the salvage radiation to start on 1/24 and am concerned about the side effects of course, especially the urinary ones as my urinary stream is not what it used to be and I have regular leakage as it is so I fear the second insult.  Did the salvage work for you?  My urologist thinks I have micrometastasis.

  • Will Doran
    Will Doran Member Posts: 207 Member
    edited January 2017 #4
    Robotic Surgery, Radiation, and ADT

    A88M,

    I understand that you are a doctor?  So, I sort of feel funny writing to you about this.  However, for what it's worth.  I was diagnosed with a PSA of 69, Geason od 3+4-7 over three years ago (Oct. 2013).  I had a robotic assisted prostatectomy in Dec. 2013.  Surgery took 5 1/2 hours because of complications from mesh from abdominal hernia repair, and a birth defect, where my prostate was adhered to my bladder.  Also complications from muscle mass in my legs from road cycling, so getting to Lymph Nodes was difficult on the right side, even with the robot. However the doctor had the robot do "Mirror Image", as he called it, and the robot went right to the lymph nodes on the left side with no problem.   I was listed as a pT3bN1 after post surgery pathology.  My doctors treated me as an aggresive Stage 4.  I had one very tiny spot in one lymph node.  That spot was so small that it did not show up in my MRI's  No Cancer showed up anywhere else.  So, they put me on Lupron 5 weeks post surgery, and then Salvage Radiation 6 months post surgery.  I had 8 weeks, 5 days per week of Radiation with Boost Treatments at the end.  I was told those treatments were aimed at particular areas.  I guess where the Lymph nodes had been, in my right groin..  My PSA dropped to <0.010 and that held for three years.  I was on Lupron for 2 full years.  My Testosterone was down to 17.  Way below castrate level.  I have been off the Lupron for  a year at this point.  My Testosterone had come up to 134 (8 months ago), then 320 (4 months ago), and just over a week ago my Testosterone is up to 380.   As this has happened, when My "T" level got to 320, my PSA came up to 0.035.  As of last week with my "T" level at 380, My PSA has come up to 0.145.  My concern is the rate that the PSA is coming up. My Chemo Oncologist and I just talked about the rate on increase two weeks back. I was to have an appointment right now (9AM, 1/9/17), But my Doctor had to reschedule because of an emergency surgery he was called to do.  I have to wait two more weeks to see where we go next.  My doctors were hoping that my levels would " settle in", and hold.  They said they would watch my PSA and when it hit 0.2, we would have to watch it closer.  They are hoping for a slower rise.  Since my Testosterone rise has slowed down (as they hoped it would) I'm hoping that the PSA will slow down as well.  If not, I am prepared to do whatever is recommended.  We have talked about Intermitent HT , and then if that doesn't slow it down, go back on full HT.  We have talked about Lupron again or an Orchiectomy.  I had resigned myself to the Orchiectomy two years back, as we were talking about the future.  My doctors were going ot do the Orchiectomy two years ago, And I was prepared for that surgery.  However, they decided to try two years of Lupron. This was decided when my PSA went down so fast and stayed down while on the Lupron.   I am now a three year+ survivor.  My problem at this point is the damage done to my Femurs from the radiation.  I am a 6 ft 2 inch tall big boned guy.  The bone density in my body has increased everywhere except for my Femurs.  I've lost 11% Density  from the damage done by the radiation and the two years of Lupron.   So, I am now on Prolia to try and "fix' that damage.  The side effects from the Prolia are as bad, at times , as those from the Lupron.  The biggest problem is joint, bone and muscle aches in my legs.   Those are just expected as side effects from Prolia, so I've been told.  But I guess I have to "Buck it up" and deal with that, or risk hip fractures.  I feel pretty good at this point since my Testosterone is back up into the normal range (250 - 1,100).  However it is still listed as being low.  I was told it would probably never go back up to where it was pre surgery and treatments.  I have gaied 15 pounds over the last year.  I'm told it's muscle mass increase.  I've been working out and weight lifting, and as happened whne I was in my 20's and 30's I'm gaining that muscle mass back.  Both my Chemo oncologist and my Dermatologist have commented over the last 6 months how "hard" my muscles are getting.  They both have said that it seems to be muscle mass increase that has caused my weight gain.  When My Chemo Oncologist was Poking and Pounding around three weeks back she commented on the hardness of my muscles, and when my dermatologist was poking around, she also commented about my muscle hardness and the return of my body hair.  She is a former student of mine and thus we have some funny times now and then as she is poking around all the places she checks.  I have also been fighting Melanoma so I get poked a lot.  Melanoma is in remission as of a year back.

    So, as for me, the Salvage Radiation has worked to this point.  My leakage has almost gone away, and my urine stream is very good.  However the bone density is a concern.

    Best of Luck

    Know that you are in my thoughts and prayers

    Love, Peace and God Bless

    Will

  • A88M
    A88M Member Posts: 22 Member
    edited January 2017 #5

    Robotic Surgery, Radiation, and ADT

    A88M,

    I understand that you are a doctor?  So, I sort of feel funny writing to you about this.  However, for what it's worth.  I was diagnosed with a PSA of 69, Geason od 3+4-7 over three years ago (Oct. 2013).  I had a robotic assisted prostatectomy in Dec. 2013.  Surgery took 5 1/2 hours because of complications from mesh from abdominal hernia repair, and a birth defect, where my prostate was adhered to my bladder.  Also complications from muscle mass in my legs from road cycling, so getting to Lymph Nodes was difficult on the right side, even with the robot. However the doctor had the robot do "Mirror Image", as he called it, and the robot went right to the lymph nodes on the left side with no problem.   I was listed as a pT3bN1 after post surgery pathology.  My doctors treated me as an aggresive Stage 4.  I had one very tiny spot in one lymph node.  That spot was so small that it did not show up in my MRI's  No Cancer showed up anywhere else.  So, they put me on Lupron 5 weeks post surgery, and then Salvage Radiation 6 months post surgery.  I had 8 weeks, 5 days per week of Radiation with Boost Treatments at the end.  I was told those treatments were aimed at particular areas.  I guess where the Lymph nodes had been, in my right groin..  My PSA dropped to <0.010 and that held for three years.  I was on Lupron for 2 full years.  My Testosterone was down to 17.  Way below castrate level.  I have been off the Lupron for  a year at this point.  My Testosterone had come up to 134 (8 months ago), then 320 (4 months ago), and just over a week ago my Testosterone is up to 380.   As this has happened, when My "T" level got to 320, my PSA came up to 0.035.  As of last week with my "T" level at 380, My PSA has come up to 0.145.  My concern is the rate that the PSA is coming up. My Chemo Oncologist and I just talked about the rate on increase two weeks back. I was to have an appointment right now (9AM, 1/9/17), But my Doctor had to reschedule because of an emergency surgery he was called to do.  I have to wait two more weeks to see where we go next.  My doctors were hoping that my levels would " settle in", and hold.  They said they would watch my PSA and when it hit 0.2, we would have to watch it closer.  They are hoping for a slower rise.  Since my Testosterone rise has slowed down (as they hoped it would) I'm hoping that the PSA will slow down as well.  If not, I am prepared to do whatever is recommended.  We have talked about Intermitent HT , and then if that doesn't slow it down, go back on full HT.  We have talked about Lupron again or an Orchiectomy.  I had resigned myself to the Orchiectomy two years back, as we were talking about the future.  My doctors were going ot do the Orchiectomy two years ago, And I was prepared for that surgery.  However, they decided to try two years of Lupron. This was decided when my PSA went down so fast and stayed down while on the Lupron.   I am now a three year+ survivor.  My problem at this point is the damage done to my Femurs from the radiation.  I am a 6 ft 2 inch tall big boned guy.  The bone density in my body has increased everywhere except for my Femurs.  I've lost 11% Density  from the damage done by the radiation and the two years of Lupron.   So, I am now on Prolia to try and "fix' that damage.  The side effects from the Prolia are as bad, at times , as those from the Lupron.  The biggest problem is joint, bone and muscle aches in my legs.   Those are just expected as side effects from Prolia, so I've been told.  But I guess I have to "Buck it up" and deal with that, or risk hip fractures.  I feel pretty good at this point since my Testosterone is back up into the normal range (250 - 1,100).  However it is still listed as being low.  I was told it would probably never go back up to where it was pre surgery and treatments.  I have gaied 15 pounds over the last year.  I'm told it's muscle mass increase.  I've been working out and weight lifting, and as happened whne I was in my 20's and 30's I'm gaining that muscle mass back.  Both my Chemo oncologist and my Dermatologist have commented over the last 6 months how "hard" my muscles are getting.  They both have said that it seems to be muscle mass increase that has caused my weight gain.  When My Chemo Oncologist was Poking and Pounding around three weeks back she commented on the hardness of my muscles, and when my dermatologist was poking around, she also commented about my muscle hardness and the return of my body hair.  She is a former student of mine and thus we have some funny times now and then as she is poking around all the places she checks.  I have also been fighting Melanoma so I get poked a lot.  Melanoma is in remission as of a year back.

    So, as for me, the Salvage Radiation has worked to this point.  My leakage has almost gone away, and my urine stream is very good.  However the bone density is a concern.

    Best of Luck

    Know that you are in my thoughts and prayers

    Love, Peace and God Bless

    Will

    Thanks for the insight.

    Thanks for your story.  I can only wonder whether I will be down your path?  My surgeon did not take my lymph nodes?  I am doing everything I can with diet and known supplements that have some evidence of inducing apoptosis in Pca.  At this point I am quite concerned that I am going to end up with an orchiectomy.  I am going to check my PSA today my readings post surgery have been .29 10/16 .26, .30, .31, .41, .36, .35 last week.  So I am 5 months post surgery and not feeling too good about my prognosis.

  • A88M
    A88M Member Posts: 22 Member

    First Post Surgery PSA

    A88M

    I looked up my PSA numbers post surgery.  You were better off than I was, shortly after surgery..

    I was:  Surgery Dec. 2013.  Jan. 2014 PSA was .62.  June 2014 PSA was .057, and then after Radiation and Lupron--August 2014 <0.010.  I was told that the PSA counts vary depending on the individual.    You have started out with a lower PSA than I did.  As you see, my PSA went down at a rapid rate (as I stated earlier).  That is why my doctors decided against an Orchiectomy and we went with two years of Lupron instead. That way, at this time, I'm feeling more like a "normal", human male. I'll enjoy it while I still have it.   So, I am sure your PSA will go down.  I admit, the thought of Radiation and Hormone Therapy are scary.  It was for me but the results have been good so far.  If you have to do radiation and HT, I'm sure you will see an improvment.  Hang in there and Fight this Beast like the devil.  You may have read other posts by me and Swami Rakendra.  I will have to admit there was something about the Quiet Peace of Mind that I had while I was a Castrate Level (Testosterone at 17), while on Lupron.  Nothing seemed to bother me, and I was able to sort of take everything in stride.  However now, since my Testoaterone is up to 380, just the worry of my PSA changes is getting me upset.  Then, after my appointmewnt today was rescheduled because of an emergency, I really am sort of upset that I have to wait for another two weeks to see what is next.  So, as Swami Rakendra has mentioned, there are some things about HT that can be a positive in your way of life.  That's how I felt about it, while on Lupron and at Castrate Level.  Now that I'm back to a more normal Testerone Level, I still remain very patient and loving with my wife, who has been my biggest Cheerleader and support.  She is the love of my life.   I think you will see that Swami feels the same way with his wife.   However with other people, I have become impatient since my Testosterone is back up in the normal range.  I get upset when they come out with stupid statements, Like "Well, why is there a concern about PSA Levels since your prostate has been removed?"  Then there is the classic-----" I thought you were all over that by now."  No, we are never over this.  It's always hanging over our heads.  Most of these "stupid statements" come from family, especially my mother-in-law. My wife gets so upset with her mother that there is, at times, yelling on the phone.   I could just strangle those people.  While on the Lupron, these kinds of things/statements didn't bother me.  I could just ignore it and keep my mouth shut.  So, like I said there can be advantages to being at Castrate Level.  I guess that's hard to understand unless you have been there. 

    Good Luck

    Love, Peace and God Bless

    Will

    The peace of being asexual.

    I understand the positive situation of being nonreactive however being without testosterone we are giving up our manhood.  It is a sorry thing for me to embrace. I do anticipate a different world if HT is in my future.  Perhaps I will have a full head of hair again.LOL.  You and Swami Rakendra offer great perspective.  My PSA today came back at .36 which just confirms that the radiation is in my future and perhaps the HT.  I can not imagine having an orchiectomy.  This is all so crazy to think about.  Good luck with your situation.  Now that your T is high I guess you are highly anticipating the response your PSA has to those levels.  Good luck with that and thank you for the perspective.

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    You can reschedule RT with no prejudice to its outcome

    Well, SRT is not the perfect treatment for micrometastases. SRT is done guessing and nobody can assure a good hit in the dark. Luck is necessary. However, from recent studies SRT has demonstrated better outcomes (+35%) when done in combination with HT. This should be administered two months in advance of the radiation and followed with an adjuvant protocol up to six months. Without targets from image studies the radiation is applied to pre defined areas at prostate bed and to close lymph nodes. The radiologist can plan and avoid areas risking urinary issues. This is the tiny muscles at the sphincter and bladder walls  (causing urgency). You should reschedule the RT and discuss details on the above until you got higher assurances on what worries you.

    However, outcomes are never equal but similar. It all depends on ones' initial diagnosis. What was your Gleason score? Have you had any symptom before surgery?

    In my case, SRT was done six years after RP. During the WW period I tried all means to locate the bandit hideaways without success. The PSA continued to increase and when it reached 3.6 my oncologists recommended RT. This was done in 2006. The therapy pulled down the bandit almost eradicating it for good. The PSA reached a nadir 13 months latter at 0.05 ng/ml. I believe that it would have kept that status longer if done in combination with HT but such treatment was not typical by that time. in 2010 when the PSA reached 1.0 ng/ml I started hormonal therapy succeesfuly. You can read my story reading the links in these threads;

    http://csn.cancer.org/node/244938

     

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

    Best wishes,

    VG

  • Will Doran
    Will Doran Member Posts: 207 Member
    First Post Surgery PSA

    A88M

    I looked up my PSA numbers post surgery.  You were better off than I was, shortly after surgery..

    I was:  Surgery Dec. 2013.  Jan. 2014 PSA was .62.  June 2014 PSA was .057, and then after Radiation and Lupron--August 2014 <0.010.  I was told that the PSA counts vary depending on the individual.    You have started out with a lower PSA than I did.  As you see, my PSA went down at a rapid rate (as I stated earlier).  That is why my doctors decided against an Orchiectomy and we went with two years of Lupron instead. That way, at this time, I'm feeling more like a "normal", human male. I'll enjoy it while I still have it.   So, I am sure your PSA will go down.  I admit, the thought of Radiation and Hormone Therapy are scary.  It was for me but the results have been good so far.  If you have to do radiation and HT, I'm sure you will see an improvment.  Hang in there and Fight this Beast like the devil.  You may have read other posts by me and Swami Rakendra.  I will have to admit there was something about the Quiet Peace of Mind that I had while I was a Castrate Level (Testosterone at 17), while on Lupron.  Nothing seemed to bother me, and I was able to sort of take everything in stride.  However now, since my Testoaterone is up to 380, just the worry of my PSA changes is getting me upset.  Then, after my appointmewnt today was rescheduled because of an emergency, I really am sort of upset that I have to wait for another two weeks to see what is next.  So, as Swami Rakendra has mentioned, there are some things about HT that can be a positive in your way of life.  That's how I felt about it, while on Lupron and at Castrate Level.  Now that I'm back to a more normal Testerone Level, I still remain very patient and loving with my wife, who has been my biggest Cheerleader and support.  She is the love of my life.   I think you will see that Swami feels the same way with his wife.   However with other people, I have become impatient since my Testosterone is back up in the normal range.  I get upset when they come out with stupid statements, Like "Well, why is there a concern about PSA Levels since your prostate has been removed?"  Then there is the classic-----" I thought you were all over that by now."  No, we are never over this.  It's always hanging over our heads.  Most of these "stupid statements" come from family, especially my mother-in-law. My wife gets so upset with her mother that there is, at times, yelling on the phone.   I could just strangle those people.  While on the Lupron, these kinds of things/statements didn't bother me.  I could just ignore it and keep my mouth shut.  So, like I said there can be advantages to being at Castrate Level.  I guess that's hard to understand unless you have been there. 

    Good Luck

    Love, Peace and God Bless

    Will