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Lupron or Not at 76?

Posted by tbgb50 @tbgb50, Aug 1 10:36am

Background - biopsy in 2022 was completely clean. Biopsy in 2026, Gleason 9. PET shows cancer is localized.

Had first appointment with oncologist yesterday. Recommended 5 weeks of Photon radiation treatments and 2 years of Lupron. I'm fine with the radiation but:

I was told the success rate is 80% for the radiation and another 5% with the Lupron. One problem is the 80% success rate is not based on age groups so it's difficult to decide if the Lupron is worth it because:

I was told at 76 the 'recovery period' for Lupron = the amount of time you get the treatment. So 2 years of treatment + 2 years of recovery = 4 years. I'd be 80 and I was told at this age you often don't see the side effects of Lupron reverse so it seems high risk for not much reward.

Am I thinking about this correctly?

Has anyone roughly my age gone with Lupron and really regretted it? Why

THANKS!

FWIW at this point I need to decided between:

Radiation only
Radiation + 1 year of Lupron (my idea)
Radiation + 2 years of Lupron (recommendation from urologist and oncologist).

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

Profile picture for heavyphil
heavyphil | @heavyphil | 2 days ago
In reply to @tbgb50 "@heavyphil Excellent advice. As I sit here typing, I'm pissed neither the urologist no RO even..." + (show)
Profile picture for tbgb50 @tbgb50

@heavyphil Excellent advice. As I sit here typing, I'm pissed neither the urologist no RO even mentioned Orgovyx. I found out about it here. Adding to my frustration is the the RO and urologists where my sister works only use Orgovyx unless there are complications that call for Lupron.

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@tbgb50 Sometimes you NEED to get pissed! Odd saying that on a prostate forum, but it’s the truth…😉

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pesquallie | @pesquallie | 2 days ago

g1b0s,

Recent articles and research are questioning the value of low testosterone, at least after radiation treatment. My urologist has put me on TRT since my testosterone only recovered to 111 after radiation treatment. There seems to be a movement to use TRT to eliminate ADT side effects and to return to a normal testosterone level. After 3 weeks it seems to be working for me. Below are three articles I found. You will probably have to Google to get the sites.

Testosterone Supplementation After Prostate Cancer Treatment
YouTube - ISSM International Society for Sexual Medicine - Dr. Mohit Khera (Baylor College of Medicine) and Dr. Gerald Brock (Western U. London) explain the evolving view on testosterone and prostate cancer, noting a shift from seeing testosterone as harmful to recognizing potential therapeutic or preventive roles. Low testosterone is linked to higher risk of high-grade cancer, recurrence, and poorer erectile recovery. 3/28/25

Testosterone replacement therapy following definitive treatment for prostate cancer: a scoping review of safety and efficacy | International Journal of Impotence Research
Conclusion: TRT does not increase the advancement of prostate cancer and may actually decrease cancer growth. 11/26/25 summary of 12 studies.

Testosterone and prostate cancer: What's the connection? - Mayo Clinic
Conclusion: Studies have shown that testosterone replacement therapy doesn't seem to increase the risk of prostate cancer returning. 10/29/25

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oldgreenpaint | @oldgreenpaint | 2 days ago
In reply to @tbgb50 "@jim18 I've looked into Orgovyx and am going to ask the urologist about it. Cost is..." + (show)
Profile picture for tbgb50 @tbgb50

@jim18
I've looked into Orgovyx and am going to ask the urologist about it. Cost is an issue - I really don't know how preauthorizations work on my Part D plan but a year would cost $34,000 with no insurance which is doable. I'm more concerned about the quality of life than the length - I'd rather die from something else.

Thanks for the advice about exercise...this might be my biggest challenge.

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@tbgb50 If exercise is your biggest challenge, you may wish to consider going to a fitness center and having a personal trainer put together a program for you. That is what I have done, and it has been very effective at preserving my muscular health.

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1 reply
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pesquallie | @pesquallie | 2 days ago
In reply to @jimbo12 "1. I was 85 when I took 2 shots of Lupron. 2. I stopped any more..." + (show)
Profile picture for jimbo12 @jimbo12

1. I was 85 when I took 2 shots of Lupron.
2. I stopped any more shots.
3. I had not realized that lack of testosterone would affect my walking ability.
4. It's four years later, and I have still NOT regained my previous mobility.
Best wishes to you.

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@jimbo12

I had the same experience starting at age 82. I have read that men over 80 should not get ADT because side effects can be more severe and testosterone recovery is not likely. My urologist completely changed his mind in the last 6 months and has now urged me to get TRT to raise my 111-level testosterone now at age 84. My awful side effects essentially vanished by day 5 on TRT. Now I read numerous new studies that say low testosterone is bad for you and that normal testosterone may be better. To me this means that ADT treatment may not be effective against cancer.

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1 reply
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jimbo12 | @jimbo12 | 2 days ago
In reply to @pesquallie "@jimbo12 I had the same experience starting at age 82. I have read that men over..." + (show)
Profile picture for pesquallie @pesquallie

@jimbo12

I had the same experience starting at age 82. I have read that men over 80 should not get ADT because side effects can be more severe and testosterone recovery is not likely. My urologist completely changed his mind in the last 6 months and has now urged me to get TRT to raise my 111-level testosterone now at age 84. My awful side effects essentially vanished by day 5 on TRT. Now I read numerous new studies that say low testosterone is bad for you and that normal testosterone may be better. To me this means that ADT treatment may not be effective against cancer.

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@pesquallie 1. My nurse practitioner told me that TRT might raise testosterone to dangerous levels. 2. I have a PET test scheduled. 3. My recent PSA was 1.98. The PET test may show that the prostate cancer has spread. 4. I have decided that I will refuse to take Lupron again. Maybe radiation or maybe another hormone that does NOT lower testosterone or maybe I will do nothing. 5. I am 89, so ....

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2 replies
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tbgb50 | @tbgb50 | 2 days ago
In reply to @jimbo12 "1. I was 85 when I took 2 shots of Lupron. 2. I stopped any more..." + (show)
Profile picture for jimbo12 @jimbo12

1. I was 85 when I took 2 shots of Lupron.
2. I stopped any more shots.
3. I had not realized that lack of testosterone would affect my walking ability.
4. It's four years later, and I have still NOT regained my previous mobility.
Best wishes to you.

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@jimbo12 Sorry to hear this. The RO warned me the side effects may never go away due to my age and I wouldn't know for two years after stopping Lupron. I hope your mobility improves.

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tbgb50 | @tbgb50 | 2 days ago
In reply to @utahgearhead "@tbgb50 interesting as at the time I got the Lupron injection, I was an emotional &..." + (show)
Profile picture for utahgearhead @utahgearhead

@tbgb50 interesting as at the time I got the Lupron injection, I was an emotional & mental mess. I went along getting the injection. Of course afterward I thought about the pill and even raised whether my RO gave me that option. Claims to have informed me. And evidently is very costly and prone to human error of daily taking. I would have entertained it. But at the time with the test results etc. I went along with their direction.

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@utahgearhead I still haven't seen the urologist yet but the RO did not even mention the pill. I learned it was an option in this forum. You are right about the cost for Orgovyx - out of pocket two years would cost $68-$70K. While it requires pre-authorization, on medicare part D it would come down to $7K. I'm hoping the urologist is reasonable. I'd like to get started on the ADT part of the treatment. With either option, I'm thinking of one year max.

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1 reply
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Jeff Marchi | @jeffmarc | 2 days ago
In reply to @jimbo12 "@pesquallie 1. My nurse practitioner told me that TRT might raise testosterone to dangerous levels. 2...." + (show)
Profile picture for jimbo12 @jimbo12

@pesquallie 1. My nurse practitioner told me that TRT might raise testosterone to dangerous levels. 2. I have a PET test scheduled. 3. My recent PSA was 1.98. The PET test may show that the prostate cancer has spread. 4. I have decided that I will refuse to take Lupron again. Maybe radiation or maybe another hormone that does NOT lower testosterone or maybe I will do nothing. 5. I am 89, so ....

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@jimbo12
I know a few people in their 80s that are taking Nubeqa, Alone, for their prostate cancer. It seems to work quite well for them. Keeps the PSA down and minimizes the effect of hormones since testosterone can be a normal level.

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utahgearhead | @utahgearhead | 2 days ago
In reply to @tbgb50 "@utahgearhead I still haven't seen the urologist yet but the RO did not even mention the..." + (show)
Profile picture for tbgb50 @tbgb50

@utahgearhead I still haven't seen the urologist yet but the RO did not even mention the pill. I learned it was an option in this forum. You are right about the cost for Orgovyx - out of pocket two years would cost $68-$70K. While it requires pre-authorization, on medicare part D it would come down to $7K. I'm hoping the urologist is reasonable. I'd like to get started on the ADT part of the treatment. With either option, I'm thinking of one year max.

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@tbgb50 yes, I’d be covered and I have great secondary insurance so the cost wouldn’t have been the deciding factor for me. I would have liked more of an education from my initial consult with the two ROs. I hope you do well, I just finish my 2nd of 5 SBRT and it has made me tired already. We will see. I’m on month4 I don’t think I could stay on it for a year.

REPLY
Profile picture for pesquallie
pesquallie | @pesquallie | 2 days ago
In reply to @jimbo12 "@pesquallie 1. My nurse practitioner told me that TRT might raise testosterone to dangerous levels. 2...." + (show)
Profile picture for jimbo12 @jimbo12

@pesquallie 1. My nurse practitioner told me that TRT might raise testosterone to dangerous levels. 2. I have a PET test scheduled. 3. My recent PSA was 1.98. The PET test may show that the prostate cancer has spread. 4. I have decided that I will refuse to take Lupron again. Maybe radiation or maybe another hormone that does NOT lower testosterone or maybe I will do nothing. 5. I am 89, so ....

Jump to this post

@jimbo12

The purpose of all ADT's is to lower testosterone because somehow cancer feeds off of testosterone. Recent data indicates this may not be true. Most prostate centers now believe that testosterone has little to no effect on cancer and in some cases, like aggressive cancer, it may actually reduce the risk of cancer spread. Most are waiting for more data but some like Baylor College think ADT may be harmful. See the following site:

Testosterone Supplementation After Prostate Cancer Treatment
YouTube - ISSM International Society for Sexual Medicine - Dr. Mohit Khera (Baylor College of Medicine) and Dr. Gerald Brock (Western U. London) explain the evolving view on testosterone and prostate cancer, noting a shift from seeing testosterone as harmful to recognizing potential therapeutic or preventive roles. Low testosterone is linked to higher risk of high-grade cancer, recurrence, and poorer erectile recovery. 3/28/25

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