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Testosterone replacement after radiation and Orgovyx?
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.
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Ouch, after 15y from surgery it came back?? How is this possible? Where the hell the devil can hide and survive so long? I dont understand. I had surgery 2,5years ago and PSA went 0.2 after two years. I have Orgovyx 6months and my radiation 33x ended two weeks ago. Gleason was 3+4 and negative marginals. What are odds that im free after my rad and ADT?
I’m dealing with similar concerns. ADT stopped about a year ago and Testosterone stayed in the cellar for over a year and is just now starting to show signs of returning. I’ll wait until it stops increasing before requesting T therapy. Besides relief from ADT and if PSA returns, I’d like images to identify where cancer cells are hanging out and discuss possible measures to go after them. If ADT is called for again, I’d prefer a shorter time duration that factors in this delayed recovery.
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1 ReactionI'm not sure if it ever goes away completely. Mine came back after 11 years. 36 proton radiation and hormone therapy during that period and my PSA is forever creeping up again. Last test it was at 5.25. After 5 years and 4 PET scans, there is no detectable cancer. It's somewhere I'm sure. Just wait and see until it raises its ugly head.
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2 ReactionsYou are definitely a case where it could come back if you get testosterone injections. Your doctors are being honest, telling you they don’t know what would happen. Getting regular PSA test after starting testosterone Would be essential. Going back on the ADT drugs would probably drop your PSA back down, But you may get metastasis from the increased testosterone, feeding the cancer, And then you’re in for another set of treatments.
The PSE test is supposed to see whether or not there is still prostate Cancer in your system. It’s a simple blood test. I don’t think their claims have been approved by the FDA, but they say their test does find it if it’s in your blood. You could do that test before trying to increase your testosterone more. That could give you a warning ahead of time about what could happen.
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5 ReactionsTough call, but I am having my last salvage radiation session today and will be on Orgovyx for 2 more months.
I NEVER WANT TO GO THRU THIS AGAIN and if my T stays low, so be it.
I have lifted weights, cycled and walked the whole time and have not gained weight. Sure, I’m tired but not so badly that a little nap - or a cup of coffee - doesn’t help.
I know we’re all different but I wouldn’t do anything to encourage any cells still viable to get a foothold - they don’t need encouragement. Just my opinion!
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4 ReactionsI was told that if testosterone is below normal after radiation and ADT for more than two years then it can be supplemented but only to the point of normal, not the higher levels 1000+ levels many guys choose.
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4 ReactionsIt didn't come back without any warning. My PSA was undetectable for a year or so after surgery, then started creeping up very slowly using the ultra sensitive PSA. But it was too low to do anything about and there was no way to determine where the PSA was coming from ("low and slow" as my doctor put it). It reached 0.2 after 15 years, and the PSMA became available (I'm a UCSF patient and they co developed the PSMA). It was detected in the prostate bed so they were able to target the radiation.
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3 ReactionsPSMA-PET-TT didnt find anything from me, but the raditation is targetted also to prostate bed. I have also lost my libido, when starting these ADT-drugs. I dont even want to watch porn. Before this second wave I have had my erection 90% back. Now I dont care. I do care...
A little nap or cup of coffee is a great statement- I practice that too. We’re all in the same boat, bailing water out of it to keep us afloat.
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3 ReactionsI'm 60 now, so younger than you, but still not a spring chicken. My testosterone is 1.2 (thats "one point two", not "twelve") after over 3 years on Firmagon then Orgovyx.
I found that most of my strength and energy came back even without testosterone. Physiotherapy exercises every morning to strengthen specific muscles, resistance exercises on the weight bench 3x/week to increase bone density and overall muscle mass, lots of walking, and "natural" exercise like snow clearing, gardening, and yard work all contributed.
That's just to say that while testosterone can help a lot, it's not the *only* path back to more strength and energy. If you end up deciding not to take the testosterone supplements, a few appointments with a good physiotherapist to set up a rehab programme for strengthening muscles that have atrophied could be life changing.
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