Testosterone replacement after radiation and Orgovyx?

Posted by brownsf @brownsf, Dec 9, 2024

I had an RP in 2008 and a recurrence last year. I was treated with 5 months of Orgovyx and 37 radiation sessions, both of which ended about 18 months ago. My PSA has been undetectible since then but my Testosterone seems stuck around 160-180. I'm considering testosterone replacement therapy. The main symptoms I'm having from low T are tiredness and weight gain. The doctors tell me they would monitor my PSA and testosterone monthly if I begin T therapy and stop it if my PSA increases---but there's a small chance that stopping the T therapy would not restore my PSA to undetectable. They would not quote any odds. So I'm torn--it would be nice to be less tired and reverse the weight gain but after surviving the cancer and recurrence, I really don't want to go through it again. Of course, I can always wait longer to make a decision since there's a small possibility my T could still come back on its own. I'm wondering about the experience/advice of others who have been through this.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Hello everyone who has experienced and or is continuing to experience Prostate Cancer.
I just had my 70th Birthday.
I became severely debilitated at age 37 with extreme cases of CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
I have not been able to return to any kind of employment since then and have had to give up all of my sports activities, playing musical instruments and most everything associated with a normal lifestyle.
Extreme exhaustion along with a plethora of other debilitating symptoms made me bed ridden and home confined for over 20 years.
I turned out to have HYPOGONADISM so about 15 years ago, I started TRT. This became a huge game changer for me and helped me regain some kind of lifestyle and start to feel like a human being again. It didn’t do anything to heal my various disease states but it did make me measurably more functional overall.
If I am not on TRT my TOTAL TESTOSTERONE is between 20-90. Pretty much medically castrated. When on TRT, I try to maintain a level of Total T of about 700. I have a life while on it. I have no life without it. Therefore, the decision to keep taking it is an easy one for me.
I know there’s a lot of unknowns, misunderstandings and severe lack of enough credible information about returning to TRT after a successful RALP. Not as sure about radiation!
However, I was diagnosed with PC in August of 2022. I carefully and methodically researched my options and had a number of physician consultations. My RALP removed 100% of any detectable cancer. All of my cancer was limited to my PROSTATE, (thankfully). I had to quit my TRT a month before my surgery on 10/25/22. I felt absolutely horrible for the 6 months I was off of TRT. My various doctors would ask me how I was feeling and doing after my surgery and recovery period. I told them quite honestly that I wouldn’t be able to answer that question without any uncertainty until I was able to return to my TRT. Which I did in March of 2022. Within one week I feeling almost identical to my state of health just prior to my surgery. Of course, I was still recovering from all of the after effects from the removal of my Prostate. Getting better but still not back to my pre surgical, “living with a Prostate State” of things.
My PSA was < 0.014 following the surgery and has remained exactly the same with absolutely no changes through today where it’s still at < 0.014.
Without TRT I don’t have a level or quality of life that is worth living. It’s merely a daily survival mission. I was in that state of affairs for far too many years since the age of 37 and I refuse to live and or exist that way.
The FACT is……..there isn’t enough evidence yet due to a sufficient number of quality studies to fairly snd more accurately access the results of patients who return to TRT following the successful removal of their PROSTATE. Of course, the vast majority of men who get PC are not on TRT nor have they ever been.
FACT. Every man needs a sufficient amount of TESTOSTERONE to maintain a normal level of good health. Those who are interested can read up on everything “T” does and how it supports the overall health in your body.
Statistically, something like 30%-40% of PC patients experience the return of their PC within 5 years after their initial recovery. None of which has anything to do with TESTOSTERONE!
My particular risk attitude is that I certainly hope that I am in the 60%-70% of patients who remain cancer free for the rest of their life.
If not, I will probably seek some kind of combination of radiation treatment. However, I will continue with my TRT after recovery. Until anything medically or scientifically changes, there is no proof that my TRT would have caused the return of my PC to come back if it does.
I choose to live my life with a certain quality that TRT provides me with to date, ( over 34 years) nothing else can or has come anywhere close.
There are states of life worse than death, it called “LIVING DEATH!” There is absolutely NO value to me in my life when I am in that state.
Suffice to say, read and research as much as you can about TRT and decide what you think is the best course of action for YOU to take. There are NO GUARANTEES about any of it!!!
One must remain true to their own convictions and live the life they choose to live utilizing as much control and management as they can!
Best wishes to you all.
GODSPEED
Phil

REPLY
@heavyphil

This damned T question is really an enigma. We KNOW if fuels PCa, we KNOW it increases PSA, and we KNOW its absence reduces almost every biomarker associated with prostate cancer.
Yet, why don’t we get cancer in our 20’s or 30’s when T is highest? Why do most get it when their T is actually declining? How does bi-polar therapy really work on a cellular level?
Because the doctors have no answers to these simple questions (well, mine don’t - they chuckle) men will always be confused about this.
I’ve often wondered if any studies have been done on the T of cancer patients vs the T of cancer free patients. I despised organic chemistry, but I did learn that one ATOM or one extra methyl group or saturated bond will completely change the chemical properties of a molecule. Can our T change somehow and actually become the carcinogen or the initiator? My head hurts thinking about these sorts of things but all of us want to know the ‘WHY’ more than anything…

Jump to this post

"why don’t we get cancer in our 20’s or 30’s when T is highest?"

Because the testosterone doesn't cause prostate cancer; it just feeds the cancer and helps it spread once it already exists.

Since young men (under 45) almost never develop prostate cancer, their higher testosterone does them no harm, cancer-wise.

REPLY
@philipsnowdon

Hello everyone who has experienced and or is continuing to experience Prostate Cancer.
I just had my 70th Birthday.
I became severely debilitated at age 37 with extreme cases of CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
I have not been able to return to any kind of employment since then and have had to give up all of my sports activities, playing musical instruments and most everything associated with a normal lifestyle.
Extreme exhaustion along with a plethora of other debilitating symptoms made me bed ridden and home confined for over 20 years.
I turned out to have HYPOGONADISM so about 15 years ago, I started TRT. This became a huge game changer for me and helped me regain some kind of lifestyle and start to feel like a human being again. It didn’t do anything to heal my various disease states but it did make me measurably more functional overall.
If I am not on TRT my TOTAL TESTOSTERONE is between 20-90. Pretty much medically castrated. When on TRT, I try to maintain a level of Total T of about 700. I have a life while on it. I have no life without it. Therefore, the decision to keep taking it is an easy one for me.
I know there’s a lot of unknowns, misunderstandings and severe lack of enough credible information about returning to TRT after a successful RALP. Not as sure about radiation!
However, I was diagnosed with PC in August of 2022. I carefully and methodically researched my options and had a number of physician consultations. My RALP removed 100% of any detectable cancer. All of my cancer was limited to my PROSTATE, (thankfully). I had to quit my TRT a month before my surgery on 10/25/22. I felt absolutely horrible for the 6 months I was off of TRT. My various doctors would ask me how I was feeling and doing after my surgery and recovery period. I told them quite honestly that I wouldn’t be able to answer that question without any uncertainty until I was able to return to my TRT. Which I did in March of 2022. Within one week I feeling almost identical to my state of health just prior to my surgery. Of course, I was still recovering from all of the after effects from the removal of my Prostate. Getting better but still not back to my pre surgical, “living with a Prostate State” of things.
My PSA was < 0.014 following the surgery and has remained exactly the same with absolutely no changes through today where it’s still at < 0.014.
Without TRT I don’t have a level or quality of life that is worth living. It’s merely a daily survival mission. I was in that state of affairs for far too many years since the age of 37 and I refuse to live and or exist that way.
The FACT is……..there isn’t enough evidence yet due to a sufficient number of quality studies to fairly snd more accurately access the results of patients who return to TRT following the successful removal of their PROSTATE. Of course, the vast majority of men who get PC are not on TRT nor have they ever been.
FACT. Every man needs a sufficient amount of TESTOSTERONE to maintain a normal level of good health. Those who are interested can read up on everything “T” does and how it supports the overall health in your body.
Statistically, something like 30%-40% of PC patients experience the return of their PC within 5 years after their initial recovery. None of which has anything to do with TESTOSTERONE!
My particular risk attitude is that I certainly hope that I am in the 60%-70% of patients who remain cancer free for the rest of their life.
If not, I will probably seek some kind of combination of radiation treatment. However, I will continue with my TRT after recovery. Until anything medically or scientifically changes, there is no proof that my TRT would have caused the return of my PC to come back if it does.
I choose to live my life with a certain quality that TRT provides me with to date, ( over 34 years) nothing else can or has come anywhere close.
There are states of life worse than death, it called “LIVING DEATH!” There is absolutely NO value to me in my life when I am in that state.
Suffice to say, read and research as much as you can about TRT and decide what you think is the best course of action for YOU to take. There are NO GUARANTEES about any of it!!!
One must remain true to their own convictions and live the life they choose to live utilizing as much control and management as they can!
Best wishes to you all.
GODSPEED
Phil

Jump to this post

@philipsnowdon said FACT. Every man needs a sufficient amount of TESTOSTERONE to maintain a normal level of good health. Those who are interested can read up on everything “T” does and how it supports the overall health in your body.

Not so sure about how accurate this is. My latest testosterone last month was < 5. After being on ADT for eight years, it is pretty much not been above that often.

I’ve never had a serious fatigue problem, At the most, I might take a 20 minute nap in the afternoon, not every day. I stay up till after midnight at night and get up at 6 AM and I’m not tired. I took Fosamax For many years for bone strength and now I’m on Zometa. I go to the gym three days a week and walk at least 2 1/2 miles every day, and it keeps my muscles in good shape. I’ve had hot flashes and brain fog, but neither is keeping me from being active and aware of what’s going on.

I guess some people can handle low to no testosterone a lot better than others. Your combination of problems may have been why you needed testosterone so bad.

REPLY

Hi Jeffmarc,
Thanks for your thoughts and reply. Do a little reading on TESTOSTERONE to see why it’s important to maintain men’s overall good health, (not just health).
Also look up HYPOGONADISM in men. Explains the problems associated with a man’s health if his TOTAL TESTOSTERONE is too low and doesn’t fall within the normal limits. For example, even if a man is at the lower or lowest level of normal it doesn’t mean that he has enough “T” to maintain good health and or be at his best health. Of course, every man is different to some degree. However, given that the lowest level of normal “T” is about 300, my level of 20-90 is self explanatory.
I’ve never read about or heard about any man on ADT who feels well or certainly great. Without exception, they feel mostly pretty weak, no energy and no sex drive amongst other things.
This forum is designed to share information which some men may or may not be aware of. Others are seeking some points of view or advice from men who are more experienced with PC than others. There is no best treatment protocol for any man, just the best for him or at least, initially perceived as the best options for him.
As I stated earlier, regarding my continuing disabilities of the past 34 years. There aren’t any established or recognized cures or proven treatments to substantially benefit patients with very serious cases of CHRONIC FATIGUE SYNDROME and or FIBROMYALGIA. You can have a surgical procedure done to correct or improve CHIARI MALFORMATION. Mine was a combination of head, neck and brain surgery which did assist me. As a result of addressing the serious neurological problems associated with “CM,” my overall health netted some improvement. However, that just addressed one of my debilitating challenges.
Although TRT isn’t prescribed for CFS or FM, if a man has HYPOGONADISM, he can treat it pretty successfully with TRT and enjoy the benefits that normal levels of Total T can provide a man.
As you may know, they prescribe ADT to men with PC who are utilizing radiation for PC treatment. As a result, they try to get there patient to a level of “medical castration”
so he can achieve the lowest levels of Total T in his body.
My body without utilizing TRT already places me in a state of medical castration. There’s not much room to go lower from 20 to ZERO!
So, every man should do as much research on all areas pertaining to PC and the various treatments available to manage their PC. There’s no “one size fits all!” So far, the choices I’ve made have worked out well for me but there’s still downsides and after effects whether you pursue the surgical or radiation route. Some men are more blessed with a milder case of PC while others, unfortunately, have very advanced cases. The seriousness of one’s disease calls for different and or more aggressive treatment protocols than others.
To digress for just a moment. Many men who do not have PC or other health challenges and or disabilities still utilize TRT to address their HYPOGONADISM and feel measurably better as a result.
Within reason, one can pursue whatever avenues of medical treatments to improve their overall health as much or little as they choose. There are some men who choose to do absolutely nothing regarding their PC. Although that wouldn’t be my choice, I certainly respect any man’s choice to deal with his PC however he sees best..
I would never purport to anybody that I am an expert on PC and its various treatment options. However, after talking with many PC patients, based upon my observations of the depth and or lack thereof regarding their overall knowledge on the subject. I am somewhat amazed at how little effort some men put forth to learn about it and to become as educated as they otherwise could. However, again, that’s their personal choice.
I wish you the very best and appreciate the time and thoughts you’ve shared with me and others on the forum.
GODSPED

REPLY
@northoftheborder

"why don’t we get cancer in our 20’s or 30’s when T is highest?"

Because the testosterone doesn't cause prostate cancer; it just feeds the cancer and helps it spread once it already exists.

Since young men (under 45) almost never develop prostate cancer, their higher testosterone does them no harm, cancer-wise.

Jump to this post

Hey north, sure it makes sense. The T nourishes the prostate, sperm development, etc….but then it also nourishes the mutated cancer cells. It’s the bipolar treatment that blows my mind; but they do put out forest fires by lighting forest fires, and homeopathic medicine uses the causative agent to treat the disease so maybe this is why it works?

REPLY
@heavyphil

Hey north, sure it makes sense. The T nourishes the prostate, sperm development, etc….but then it also nourishes the mutated cancer cells. It’s the bipolar treatment that blows my mind; but they do put out forest fires by lighting forest fires, and homeopathic medicine uses the causative agent to treat the disease so maybe this is why it works?

Jump to this post

I think it's important to note that while there have been some interesting smaller studies, BAT isn't proven in bigger trials yet (those are underway now, one paired with Enzalutamide, and one paired with Xofigo).

Here's what Johns Hopkins says:

«"They called this alternating approach “Bipolar Androgen Therapy” (BAT) because it cycles between polar extremes of very high and very low male hormones. “The idea,” Denmeade explains, “is to mess up the cancer cell’s ability to adapt.” Paradoxically, although low levels of testosterone can make prostate cancer cells grow, “at high doses, the cancer cells don’t grow as well, or they die.”»

It seems they're testing it specifically on cancer that has already become castrate-resistant, *not* for castrate-sensitive prostate cancer — in other words, it is a potential next step once ADT stops working, not an alternative to ADT for nmCSPC or mCSPC.
https://www.hopkinsmedicine.org/news/articles/2023/12/bipolar-androgen-therapy-trials-under-way

REPLY
@philipsnowdon

Hi Jeffmarc,
Thanks for your thoughts and reply. Do a little reading on TESTOSTERONE to see why it’s important to maintain men’s overall good health, (not just health).
Also look up HYPOGONADISM in men. Explains the problems associated with a man’s health if his TOTAL TESTOSTERONE is too low and doesn’t fall within the normal limits. For example, even if a man is at the lower or lowest level of normal it doesn’t mean that he has enough “T” to maintain good health and or be at his best health. Of course, every man is different to some degree. However, given that the lowest level of normal “T” is about 300, my level of 20-90 is self explanatory.
I’ve never read about or heard about any man on ADT who feels well or certainly great. Without exception, they feel mostly pretty weak, no energy and no sex drive amongst other things.
This forum is designed to share information which some men may or may not be aware of. Others are seeking some points of view or advice from men who are more experienced with PC than others. There is no best treatment protocol for any man, just the best for him or at least, initially perceived as the best options for him.
As I stated earlier, regarding my continuing disabilities of the past 34 years. There aren’t any established or recognized cures or proven treatments to substantially benefit patients with very serious cases of CHRONIC FATIGUE SYNDROME and or FIBROMYALGIA. You can have a surgical procedure done to correct or improve CHIARI MALFORMATION. Mine was a combination of head, neck and brain surgery which did assist me. As a result of addressing the serious neurological problems associated with “CM,” my overall health netted some improvement. However, that just addressed one of my debilitating challenges.
Although TRT isn’t prescribed for CFS or FM, if a man has HYPOGONADISM, he can treat it pretty successfully with TRT and enjoy the benefits that normal levels of Total T can provide a man.
As you may know, they prescribe ADT to men with PC who are utilizing radiation for PC treatment. As a result, they try to get there patient to a level of “medical castration”
so he can achieve the lowest levels of Total T in his body.
My body without utilizing TRT already places me in a state of medical castration. There’s not much room to go lower from 20 to ZERO!
So, every man should do as much research on all areas pertaining to PC and the various treatments available to manage their PC. There’s no “one size fits all!” So far, the choices I’ve made have worked out well for me but there’s still downsides and after effects whether you pursue the surgical or radiation route. Some men are more blessed with a milder case of PC while others, unfortunately, have very advanced cases. The seriousness of one’s disease calls for different and or more aggressive treatment protocols than others.
To digress for just a moment. Many men who do not have PC or other health challenges and or disabilities still utilize TRT to address their HYPOGONADISM and feel measurably better as a result.
Within reason, one can pursue whatever avenues of medical treatments to improve their overall health as much or little as they choose. There are some men who choose to do absolutely nothing regarding their PC. Although that wouldn’t be my choice, I certainly respect any man’s choice to deal with his PC however he sees best..
I would never purport to anybody that I am an expert on PC and its various treatment options. However, after talking with many PC patients, based upon my observations of the depth and or lack thereof regarding their overall knowledge on the subject. I am somewhat amazed at how little effort some men put forth to learn about it and to become as educated as they otherwise could. However, again, that’s their personal choice.
I wish you the very best and appreciate the time and thoughts you’ve shared with me and others on the forum.
GODSPED

Jump to this post

While some tolerate it better than others, nobody here loves low testosterone, so I don't think there's any disagreement.

We put up with low T only because we want to stay alive (especially those of us with mCSPC). And to be fair, rough as it is, ADT is much milder (and more effective) than the treatments people have to endure for most other stage-4 cancers.

REPLY
@philipsnowdon

Hi Jeffmarc,
Thanks for your thoughts and reply. Do a little reading on TESTOSTERONE to see why it’s important to maintain men’s overall good health, (not just health).
Also look up HYPOGONADISM in men. Explains the problems associated with a man’s health if his TOTAL TESTOSTERONE is too low and doesn’t fall within the normal limits. For example, even if a man is at the lower or lowest level of normal it doesn’t mean that he has enough “T” to maintain good health and or be at his best health. Of course, every man is different to some degree. However, given that the lowest level of normal “T” is about 300, my level of 20-90 is self explanatory.
I’ve never read about or heard about any man on ADT who feels well or certainly great. Without exception, they feel mostly pretty weak, no energy and no sex drive amongst other things.
This forum is designed to share information which some men may or may not be aware of. Others are seeking some points of view or advice from men who are more experienced with PC than others. There is no best treatment protocol for any man, just the best for him or at least, initially perceived as the best options for him.
As I stated earlier, regarding my continuing disabilities of the past 34 years. There aren’t any established or recognized cures or proven treatments to substantially benefit patients with very serious cases of CHRONIC FATIGUE SYNDROME and or FIBROMYALGIA. You can have a surgical procedure done to correct or improve CHIARI MALFORMATION. Mine was a combination of head, neck and brain surgery which did assist me. As a result of addressing the serious neurological problems associated with “CM,” my overall health netted some improvement. However, that just addressed one of my debilitating challenges.
Although TRT isn’t prescribed for CFS or FM, if a man has HYPOGONADISM, he can treat it pretty successfully with TRT and enjoy the benefits that normal levels of Total T can provide a man.
As you may know, they prescribe ADT to men with PC who are utilizing radiation for PC treatment. As a result, they try to get there patient to a level of “medical castration”
so he can achieve the lowest levels of Total T in his body.
My body without utilizing TRT already places me in a state of medical castration. There’s not much room to go lower from 20 to ZERO!
So, every man should do as much research on all areas pertaining to PC and the various treatments available to manage their PC. There’s no “one size fits all!” So far, the choices I’ve made have worked out well for me but there’s still downsides and after effects whether you pursue the surgical or radiation route. Some men are more blessed with a milder case of PC while others, unfortunately, have very advanced cases. The seriousness of one’s disease calls for different and or more aggressive treatment protocols than others.
To digress for just a moment. Many men who do not have PC or other health challenges and or disabilities still utilize TRT to address their HYPOGONADISM and feel measurably better as a result.
Within reason, one can pursue whatever avenues of medical treatments to improve their overall health as much or little as they choose. There are some men who choose to do absolutely nothing regarding their PC. Although that wouldn’t be my choice, I certainly respect any man’s choice to deal with his PC however he sees best..
I would never purport to anybody that I am an expert on PC and its various treatment options. However, after talking with many PC patients, based upon my observations of the depth and or lack thereof regarding their overall knowledge on the subject. I am somewhat amazed at how little effort some men put forth to learn about it and to become as educated as they otherwise could. However, again, that’s their personal choice.
I wish you the very best and appreciate the time and thoughts you’ve shared with me and others on the forum.
GODSPED

Jump to this post

I think your case is really an exception and can’t really be compared to those of us without hypogonadism. That condition has been with you from puberty and no one really knows how much that affected every cell in your body - especially those in development in the critical adolescent years.
You were basically castrated by your own body and all those maladies ensued. Of course you felt horrible and never want to feel that way again. You KNOW what it’s like to exist and have a life not worth living….I do not.
So if you need the T to actually live a full life, then you have to take it, IMO. You know the risks it poses for prostate cancer recurrence, but if you are going to be truly miserable without it, why did you have life saving surgery done in the first place, right? Why go thru all that….for a horrible existence?
I applaud your decision and the courage to live life on your own terms. We only get one chance and it’s all what YOU make of it. Best…

REPLY

I had just four months of Orgovyx, completed end of January. My T recovery has been slow and only 50% recovered. My RO referred me to a specialist that he said I could see after one year, meaning January 2025. This guy is a testosterone expert and we can come to a consensus whether it's a good decision for me or not. My RO doesn't feel there's much risk in my particular case. While I'm mostly recovered, I still have some hot flashes, about 5 pounds of extra belly fat and can't seem to run the entire distance on a 5K race that I was able to do just before Orgovyx. I'm 72 and my PCa was 4+3.

REPLY
@seasuite

I had just four months of Orgovyx, completed end of January. My T recovery has been slow and only 50% recovered. My RO referred me to a specialist that he said I could see after one year, meaning January 2025. This guy is a testosterone expert and we can come to a consensus whether it's a good decision for me or not. My RO doesn't feel there's much risk in my particular case. While I'm mostly recovered, I still have some hot flashes, about 5 pounds of extra belly fat and can't seem to run the entire distance on a 5K race that I was able to do just before Orgovyx. I'm 72 and my PCa was 4+3.

Jump to this post

My testosterone at age 72 was 439; tested 1x before Salvage Radiation Treatment including 4 mos Orgovyx.
6 mos 274; 9 mos - 15 mos 349, 310, 345 & 335 (4 quarterly tests); about 75% pretreatment recovery.
My Radiation Oncologist is "fine" with my T being in the lower range of "normal".
My regular 45 walk took me about 50 - 55 mins during and after tx; and has returned to about 45 mins currently.
Of course, I am now 74 and age together with tx take their toll (no EZ Pass) on us.
Just sharing information in the hope that it is helpful to you.
Best wishes.

REPLY
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