Testosterone recovery after ADT

if you’ve had cancer and have a high Gleason (above 7) then you have to be careful about high testosterone. it can sneak up on you and result in spread. PSA tests regularly. Many people fall in the 400-500 range, 770 is higher than most people get.

Appreciate the comments and yes, I need to monitor PSA regularly. My Gleason scores were 3+3, 3+4, 4+3, Decipher was intermediate. My urologist said at my last visit if PSA increases any more he will probably want to repeat the PSMA. My next consultation with RO is not until April, unless there is a need for it sooner; they also get my bloodwork results.

Interesting. So, assuming my T comes back at all after ADT, is there some way to regulate it to stay within normal range but not go so high that it's cause for concern?

I don’t think most people have to regulate it, when yours comes back, I doubt it will be above 600. Even if it is above 400 though you should be getting regular PSA test to make sure it doesn’t come back. I was hearing from a guy two weeks ago who was talking about the fact that he took a couple of vacations from ADT and he now has multiple metastasis throughout his body. He was a Gleason nine, so Gleason is a factor, but even with a lower Gleason score, you need to be careful.

I suspect if you took monthly test for six or nine months and then went to bimonthly and then every quarter you could feel comfortable that it’s being watched for recurrence.

See what your doctor has to say, hopefully you have an informed oncologist you are working with.

Yes, ADT ends soon and then the plan is quarterly PSA tests for two years, then twice a year for three years, then once a year after that, assuming it doesn't come back. My oncologist told me the stats show 80% chance of being BCR-free after five years and 70% after 10. However, I think the odds are actually higher because some people die of other things during that time period so aren't counted in the stats. Still, if I can get even a few years without having to go back on ADT it will be a win.

Here's mine (see attached clinical history).

A lot of factors go into recovery of T, age, baseline, which agent you used...

I have not. nor considered using supplements.

I have read some articles that may indicate exercise may play a role. I'm pretty active but that's not necessarily a correlation.

Well, here's the update. I'm now five months post Orgovyx and my second testosterone test showed a level in the 200s and well below normal. Other guys in my support group said they were up into the 500+ range in only a couple of months so I'm a definite outlier. I still can't have orgasms (almost six months now) but my doctors are split on this: one says it's because my T is too low, the other says that's just a thing that happens after SBRT and is permanent about 40% of the time (gee, thanks for warning me about that pre-treatment!). I've completely lost faith in my cancer care team and feel they 1. were never fully honest with me from the start about what side effects might occur and the high prevalance of them and 2. they like to give a lot of false hope by saying stuff like "things might still improve" or "let's wait awhile longer and see what happens." I'm taking six months off from ALL doctors--cancer, bone health, cardiologist, eye, dentist and mental health and then will revisit what I want to do.

I was a low T guy prior to tx at 250. So my expectations are low for a high rebound. I have to agree with your comments about optimistic doctors. If they weren't patients wouldn't go back. Private medicine literally banks on that.

I have Gleason 8 and was put on Elegard for 3 years. Can't takes zytiga or any related drug due to heart attack and surgery. Maybe that's why on the 3 year plan!

I was on ADT for eight years, So I can relate. I had to quit taking zytiga because Of how it treated my heart (Afib).

Did your doctor consider putting you on Darolutamide? It has few problems with the heart, For me, it is worked quite well and not caused any more heart issues.

I was on ADT (Eligard, Lupron, Orgovyx) alone for Almost 3 years before my PSA started rising, and I became castrate resistant. So staying on Eligard May work OK as long as your PSA stays undetectable. At that point, you need to consider a second drug an ARSI like Darolutamide.