Testosterone Replacement Therapy after 12months of Orgovyx and Radiati

Posted by ava11 @ava11, 5 days ago

By March 31st, 2026, it would be 12 months since I stopped Orgovyx and RT. My total Testosterone is 65 now and it was 87 few weeks ago.
My oncologist recommends TRT. But I am reluctant because of the cancer recurrence. He says the risk is same if my T goes up naturally or with TRT, based on new studies.
My main issues are occasional fatigue bouts lasts few seconds and prolonged exercise tolerance and changes in biomarkers.
Any of you have undergone TRT after ADT? What is your experience/
What happened when you stopped TRT. Did your T levels go down?

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Profile picture for scottbeammeup @scottbeammeup

@ava11 My LH and FSH levels are as high as the lab can measure them, i.e. off the chart. My brain is doing all the proper signaling to start making T again but my body isn't listening. My urologist said it may be "testicular failure." This is something that was NEVER even mentioned as a possibility so I am quite angry about it. I was woefully kept in the dark about ADT side effects when I was in cancer panic mode and seeking treatment. Knowing what I know now, I would have skipped it and done radiation alone as I feel ADT has done me more harm than good. Even the name "hormone therapy" is benign sounding for what it actually is.

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@scottbeammeup
Dr Scholz says on You Tube video's that about 50% of older people never get their Testosterone back to their pre-treatment levels. I asked My Radiation oncologist at UCLA what if I don't take hormone therapy. He said my chances of cancer recurrence is 50%! ADT cuts it down by 50%.
He said ADT makes Radiation more effective.

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Profile picture for ava11 @ava11

@scottbeammeup
Dr Scholz says on You Tube video's that about 50% of older people never get their Testosterone back to their pre-treatment levels. I asked My Radiation oncologist at UCLA what if I don't take hormone therapy. He said my chances of cancer recurrence is 50%! ADT cuts it down by 50%.
He said ADT makes Radiation more effective.

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@ava11 I've heard that and specifically asked. I was told "it might be slightly lower but because you're under 65 and only on it for six months you're a good candidate to recover and Orgovyx has a quicker recovery."

In the prostate cancer world doctors use very deceptive definitions of "continence," "testosterone recovery" and "potency."

The average person thinks of "continence" as not peeing on yourself while many doctors and studies consider one pad a day to be "continent."

The average person thinks of "testosterone recovery" as, well, recovery.

The average person thinks of "potency" as being able to get an erection when stimulated while doctors consider someone who has to use pills or injections when they didn't before treatment to be "potent."

I think I could have been better prepared for the fallout, and made better decisions, if I'd known the truth up front.

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Profile picture for scottbeammeup @scottbeammeup

@ava11 My LH and FSH levels are as high as the lab can measure them, i.e. off the chart. My brain is doing all the proper signaling to start making T again but my body isn't listening. My urologist said it may be "testicular failure." This is something that was NEVER even mentioned as a possibility so I am quite angry about it. I was woefully kept in the dark about ADT side effects when I was in cancer panic mode and seeking treatment. Knowing what I know now, I would have skipped it and done radiation alone as I feel ADT has done me more harm than good. Even the name "hormone therapy" is benign sounding for what it actually is.

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@scottbeammeup

I am 83 and had 44 radiation treatments and 4 months of Lupron to handle a PSA=11.1 and Gleasons of 3 ea. 3+4 and 1 ea. 4+4 out of 12 samples. I had horrible side effects of soaking cold sweats 24 hours/day, severe headaches, frequent urination, brain fog, and joint/bone pain. My doctor stopped the Lupron but said he would never give a testosterone supplement. My treatments ended in July, and I still have about 50% of the severity of the side effects after 7 months. At one month and 4 months after radiation my PSA's were < 0.1 and my testosterones were 6.9 and 8.7. I wonder if I should have even had Lupron since one responder said that Mayo does not recommend any ADT if over 80 years old. Does anyone know if this is true? My urologist will not even talk about having a testosterone supplement to alleviate my painful side effects.

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Profile picture for pesquallie @pesquallie

@scottbeammeup

I am 83 and had 44 radiation treatments and 4 months of Lupron to handle a PSA=11.1 and Gleasons of 3 ea. 3+4 and 1 ea. 4+4 out of 12 samples. I had horrible side effects of soaking cold sweats 24 hours/day, severe headaches, frequent urination, brain fog, and joint/bone pain. My doctor stopped the Lupron but said he would never give a testosterone supplement. My treatments ended in July, and I still have about 50% of the severity of the side effects after 7 months. At one month and 4 months after radiation my PSA's were < 0.1 and my testosterones were 6.9 and 8.7. I wonder if I should have even had Lupron since one responder said that Mayo does not recommend any ADT if over 80 years old. Does anyone know if this is true? My urologist will not even talk about having a testosterone supplement to alleviate my painful side effects.

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@pesquallie
I was 88 when I was diagnosed with Gleason 9(4+5). I started Orgovyx on April 1st 2024 and I had 5 sessions of SBRT Radiation Therapy starting on April 8,2024. My side effects are nothing compared to yours. Radiation has side effects too. May be some of your side effects are from Radiation.

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Any of you have used Enclomiphene to deal with fatigue?

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Profile picture for ava11 @ava11

@pesquallie
I was 88 when I was diagnosed with Gleason 9(4+5). I started Orgovyx on April 1st 2024 and I had 5 sessions of SBRT Radiation Therapy starting on April 8,2024. My side effects are nothing compared to yours. Radiation has side effects too. May be some of your side effects are from Radiation.

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@ava11

Thank you for your comment. My radiation experience was also very painful, but it ended one week after the last treatment just as the oncologist promised. However, the Lupron side effects never seem to stop and there are articles and studies that now suggest that ADT may make aggressive cancer worse. However, this is still under discussion and study.

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I was out on TRT when my T didn't recover 2 years after triple therapy for G9 oligometastatic cancer. Mt PSA was undetectable and remained so for a year after TRT. Last week it was 0.2. There is no way to know if my PSA would have gone up without TRT or not. I know my QOL was hugely improved with TRT.

I believe current research is showing that TRT does not cause PSA to rise in selected patients and is beneficial.

Here is the abstract from a recent review article:

Review Article
Open access
Published: 26 November 2025
Testosterone replacement therapy following definitive treatment for prostate cancer: a scoping review of safety and efficacy

John Gibson, Michael George, Peter Grice, Amar Mohee, Theodora Stasinou, Ian Pearce & Vaibhav Modgil on Behalf of Manchester Andrology Research Collaborative (MARC)
International Journal of Impotence Research (2025)Cite this article

2433 Accesses
13 Altmetric
Metrics details
Abstract
Testosterone replacement therapy (TRT) remains controversial in men with a history of prostate cancer due to historical concerns regarding oncologic safety. This scoping review aimed to systematically map existing evidence on the safety and efficacy of TRT in men following definitive treatment for prostate cancer. A systematic search of PubMed, CENTRAL, and Embase identified 447 records, from which 12 studies met inclusion criteria. Most were retrospective cohort studies, with sample sizes ranging from 10 to 152 men. TRT was not associated with an increased risk of biochemical recurrence or cancer progression in any included study. Reported PSA kinetics remained within expected post-treatment parameters, and several studies showed lower recurrence rates in TRT groups compared to controls. TRT consistently increased total and/or free testosterone and improved hypogonadal symptoms.

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I completed 4 months of Orgovyx two years ago. I still had/have nasty side effects, including hot flashes, visceral fat, weakness and mild ED. I started TRT about 8 months ago, on advice of several Urologists and ROs. My T level rose from 250 to over 400, but, the side effects never stopped. I've been tapering off TGel and now only take 1 pump every other day since it doesn't cure my issues with this AWFUL drug that has seemingly rewired my hormonal system. My urologist also said that taking TGel will reduce my ability to produce it naturally. I've exhausted all the urologist paths having seen 3 from two different institutions. I have an appointment with endocrinology next to see if they can shed some light on the mystery. The Orgovyx side effects have been far worse than those from RT.

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Profile picture for retireddoc @retireddoc

I was out on TRT when my T didn't recover 2 years after triple therapy for G9 oligometastatic cancer. Mt PSA was undetectable and remained so for a year after TRT. Last week it was 0.2. There is no way to know if my PSA would have gone up without TRT or not. I know my QOL was hugely improved with TRT.

I believe current research is showing that TRT does not cause PSA to rise in selected patients and is beneficial.

Here is the abstract from a recent review article:

Review Article
Open access
Published: 26 November 2025
Testosterone replacement therapy following definitive treatment for prostate cancer: a scoping review of safety and efficacy

John Gibson, Michael George, Peter Grice, Amar Mohee, Theodora Stasinou, Ian Pearce & Vaibhav Modgil on Behalf of Manchester Andrology Research Collaborative (MARC)
International Journal of Impotence Research (2025)Cite this article

2433 Accesses
13 Altmetric
Metrics details
Abstract
Testosterone replacement therapy (TRT) remains controversial in men with a history of prostate cancer due to historical concerns regarding oncologic safety. This scoping review aimed to systematically map existing evidence on the safety and efficacy of TRT in men following definitive treatment for prostate cancer. A systematic search of PubMed, CENTRAL, and Embase identified 447 records, from which 12 studies met inclusion criteria. Most were retrospective cohort studies, with sample sizes ranging from 10 to 152 men. TRT was not associated with an increased risk of biochemical recurrence or cancer progression in any included study. Reported PSA kinetics remained within expected post-treatment parameters, and several studies showed lower recurrence rates in TRT groups compared to controls. TRT consistently increased total and/or free testosterone and improved hypogonadal symptoms.

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@retireddoc
Thank You for your post.
I understand, if I go on TRT, I have to be on it for the rest of my life because Pituitary gland stops signaling to produce T naturally. Is that true? Don't I have to stop TRT if my PSA keeps raising at some point? Does it mean I will be on TRT intermittently?

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Profile picture for ava11 @ava11

@retireddoc
Thank You for your post.
I understand, if I go on TRT, I have to be on it for the rest of my life because Pituitary gland stops signaling to produce T naturally. Is that true? Don't I have to stop TRT if my PSA keeps raising at some point? Does it mean I will be on TRT intermittently?

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@ava11
Please let me preface this reply that nothing I may say takes the place of discussion with your treating physician. Having said that, it is generally true that if you are on TRT for an extended period of time (especially later in life) your pituitary gland stops producing LH/FSH and your testicles will no longer be able to produce testosterone in sufficient amount. My MO at Hopkins told me if I started TRT it was for life.

TRT in the setting of prostate cancer is, of course, controversial. I believe more urologists/MO/RO are beginning to believe that certain patients benefit from TRT if their T doesn't rebound after ADT is discontinued. I suspect that most experts would discontinue TRT if PSA is rising and maybe start again if PSA becomes undetectable for a period of time after therapy.

My personal, anecdotal experience is TRT was a game changer regarding my well being and amelioration of symptoms related to low T. QOL is very important to me.

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