Testosterone Recovery after stopping orgovyx

It is the same health care system so I figured I would get the run around. All I did was ask him to read some articles to let me know what he thought. I am searching for a new doctor outside that system.

My experience, albeit not sure what the question is...

I did 12 months of Orgovyx, April 2023-April 2024. We measured PSA every three months since and T twice, at three - 328 and six months - 445, start point at treatment was 608. I have my upcoming Medicare annual wellness exam where my PCP does labs and he's included T

So at seven weeks, 45 may not be at the same rate mine was.

I am not sure why I recover so "well" after ADT. One theory I've seen literature on is the role of exercise in T recovery, I go to the gym most days, other days I ride my bike. I take care of all the yard work, active vacations where we hike a lot...so, maybe?

Perhaps the other question is TRT. The old adage is T is fuel for the fire...I am not sure of that. When I came off triplet therapy in May of 2017 with my last 90-day Lupron shot, my T recovered in a similar pattern. It was four plus years before my PCa started acting up. After 12 months of Orgovyx, my PCa lays quiet.

So, if T is the fuel, my PCa should have reared its ugly head long before it did after triplet therapy and even now, it should have. My medical team has no explanation, nor I have I found any in my literature searches. They and I just say, be happy, I am. There is a noticeable difference though as I say, the only noticeable difference between what I do on, and off ADT is how I feel doing it.

So, if your medical team does not want to discuss TRT, find others. I have fired two urologists and an oncologist over these 11+ years for their inability to actively listen, be open to other ideas and share in decision making.

Kevin

My Orgovyx experience was a bit different. My T was 600 before starting. Three months after stopping it returned to ~360 but then after six months it dropped into the 200s and now below normal. This was very discouraging but my doctor said it can bounce around for awhile so we'll see.

I would ask your doctor to do a full testosterone panel: testosterone, free testosterone, estradiol, FSH, SHGB, etc. This will give a better picture of how you're recovering.

Realistically, you won’t get drs to read anything you send them. They are totally overwhelmed with patient load, administration and ‘paperwork’ although today it’s done on a laptop.
Even if you sent them research articles from NIH and major cancer institutes, they would look at the title and that’s it.
Treatment for this disease is perilous - everything comes at a cost. When the dr or Np read me my rights about all the possible side effects of this or that I didn’t even listen….why bother? I read all about it already and I was focused on the cancer, all else be damned.
So whatever the ADT did to me, or whatever the radiation does to me down the line I am not gonna look for the ‘whys’ - I KNOW why. If there’s something I can do about it, I will and if not, it will suck to high heaven and I’ll just have to deal with it the best I can.
Radiation kills… So it can also bring on things less fatal - neuropathy, incontinence, secondary cancers, etc. After treatment, anything goes and you are pretty much on your own, since like a cracked egg, the damage really cannot be undone. Not fun to hear, but there it is. Best,
Phil

Testosterone recovery is unevenly distributed among us.

2 recent patient directed webinars on PCF.org discuss hormone therapy and mention recovery of T.

Very generally, the longer you are on ADT, the longer to recovery; between equal to or double the treatment time is a very rough summary.

And age is a factor. And it is very individual. And some men never recover T.

At 73, I had 4 mos of Orgovyx with a baseline of 439.

5 mos after ADT , my T was in the 200s; 9 - 15 mos my T was in the low to mid 300s. At age 75, 18 & 21 mos following tx, my T has surprised me by rising to the low - mid 400s.

Just 1 Layman's experience. And no, I have no explanation.

Best wishes.

How are you feeling as it rises

Kevin, I'm with you on the thinking about T/TRT regarding stimulating the prostate cancer, as I have previously posted. I have been on TRT for about 6 months and all is well with undetectable PSA. My oncologist at Hopkins primarily treats men with oligo metastatic disease with aggressive triplet therapy, radiation/RP to primary site and MDT. Those that respond (significant majority) are taken off ADT after one year and T allowed to recover. If it doesn't they are put on TRT.

I agree that I don't believe the concept that T consistently fuels all prostate cancer is correct. It is likely much more complicated and depends on many factors. No question that long term ADT is detrimental to QOL but also general health. Does prolonged T suppression promote development of castrate resistant disease? I don't know the answer but it seems reasonable that it might contribute.

T deficiency affects men differently. I was pretty miserable. The restoration of my T levels has been night and day for me. At 72, my QOL is important. When I last saw my MO at Hopkins in 10/24 prior to putting me on TRT, he said to me "you are a 70 yo man living in a 90 yo old body" with T suppression. It was his idea to put me on TRT, not mine. But I all in.

Dr Mark Schulz of PCRI said if My T doesn't go up from 45, he is open for TRT. I exercise regularly including 3 times at gym working out for an hour under semi-private lessons.
See what happens in the next 3 months.

But I will not rush into TRT if I feel the same way I do now!

For what it is worth, I found this on TRT in my research.

Testosterone, or low T. No matter what you call it, it’s time to debunk the myth that testosterone therapy for men with low T increases prostate cancer risk.
It all began over 80 years ago. “In 1941 Huggins and Hodges reported that marked reductions in T by castration or estrogen treatment caused metastatic [prostate cancer or PCa] to regress, and administration of exogenous T caused [PCa] to grow. Remarkably, this latter conclusion was based on results from only one patient.”[i] For decades afterward, this misled clinicians to believe that testosterone therapy, or TTh, fed the development of PCa.
However, since the late 1960s there’s been an increasing body of published research suggesting that this is simply not the case. Today, medical societies concerned with prostate cancer such as the European Association of Urology (EAU) and the American Urological Association (AUA) acknowledge that TTh does not appear to increase PCa risk—though they hedge on the issue by calling for continued research.
In fact, published reviews of high quality clinical trials comparing TTh vs placebo have yet to demonstrate a clear link between testosterone therapy (including injectables, gels, etc.) and developing or worsening the disease. One critique of such studies, however, is that they don’t distinguish between men at low risk (i.e. no family history of PCa) and men at high risk due to PCa family history.
To remedy this, a multicenter team from the U.S. and Italy ran a population analysis of patients with low T covering a 10-year period.[ii] All patients were defined as being at high risk for PCa based on family history. The study formed two patient cohorts of 623 men each whose baseline characteristics were balanced between the two groups:
a. One group of low T patients received TTh over the 10 years of the study.
b. The other group of low T patients did not receive TTh during the 10 years.
Based on their analysis, the authors found that the cohort who received TTh did not show a higher risk of being diagnosed with any PCa or of receiving any active treatment compared with the non-TTh cohort.
What makes this study unique is its focus on men at high risk for PCa. The authors cite several earlier studies, including one of the most recent randomized controlled studies that did not find “any significant difference in terms of incidence of high grade or any PCa in TTh group [with] respect to placebo.”[iii] However, that study did not include men considered at high-risk for the disease. Although there are a few limitations to the new study, the work of these authors has strong numbers demonstrating that testosterone therapy for men with low T who have a family history of PCa does not appear to raise their chances of developing PCa. Thus, the authors express hope that their findings “… should stimulate the scientific community to conduct [randomized controlled trials] in this field, which are crucial for further understanding the relationship between TTh and PCa in this population.”[iv]
On a final note, testosterone therapy has now been demonstrated to be safe for prostate cancer patients who have undergone treatment and who also have low T. There is no clear evidence that it increases the risk of disease progression or recurrence. However, experts recommend that doctors and patients discuss the benefits and possible risks, and also that a patient’s low T has been validated through testing and not symptoms alone.
We congratulate the authors on their research demonstrating that TTh is safe for men at high PCa risk due to family history, should they become deficient in the all-important male hormone, testosterone.
NOTE: This content is solely for purposes of information and does not substitute for diagnostic or medical advice. Talk to your doctor if you are experiencing pelvic pain, or have any other health concerns or questions of a personal medical nature.
References
[i] Morgentaler, Abraham. Testosterone and Prostate Cancer: An Historical Perspective on a Modern Myth. European Urology, Volume 50, Issue 5, 935 – 939.
[ii] Pozzi E, Able CA, Kohn T, Kava BR, Montorsi F, Salonia A. Incidence of prostate cancer in men with testosterone deficiency and a family history of prostate cancer receiving testosterone therapy: a comparative study. BMJ Oncol. 2025 Mar 6;4(1):e000520.
[iii] Bhasin S, Travison TG, Pencina KM, et al. Prostate Safety Events During Testosterone Replacement Therapy in Men With Hypogonadism: A Randomized Clinical Trial. JAMA Netw Open. 2023;6:e2348692.
[iv] Pozzi et al, ibid.

About Dr. Dan Sperling

Dan Sperling, MD, DABR, is a board certified radiologist who is globally recognized as a leader in multiparametric MRI for the detection and diagnosis of a range of disease conditions. As Medical Director of the Sperling Prostate Center, Sperling Medical Group and Sperling Neurosurgery Associates, he and his team are on the leading edge of significant change in medical practice. He is the co-author of the new patient book Redefining Prostate Cancer, and is a contributing author on over 25 published studies. For more information, contact the Sperling Prostate Center.