Slow testosterone growth
Good afternoon, dear friends.
I'm 49 years old. My cancer is genetic (ATM gene mutation).
Three years after diagnosis, initial PSA 530 (Gleason 4+5), three bone metastases, and metastases to the pelvic, cervical, and pulmonary lymph nodes. The prostate is still there, but they didn’t perform surgery on me because the doctor said it was dangerous.
Chemotherapy and ADT (Zoladex 10.8) began in May 2024
I completed eight chemotherapy sessions over six months and Zoladex 10.8 injections. After chemotherapy (October 2024), my testosterone level was 1.1 and has been slowly increasing throughout 2025 despite switching to Diphelerin 3.75. My testosterone level is 1.61 (as of November 2025).
Six months after the double combination of chemotherapy and ADT (Zoladex 10.8), I was given Erleada , start February 2025
My urologist-oncologist isn't alarmed and says everything is fine. He says I can try going back on Zoladex 10.8, but another specialist says I should stay on the medication I take monthly (Diphelerin 3.75). For now, I'm taking it monthly (once every 28 days).
I've heard that testosterone levels should be below 0.7 to minimize risks.
Furthermore, I'm told that if my testosterone levels rise to 1.7, I'll need to have my testicles removed.
PS I've noticed that my testosterone levels have slowed down recently over the past 4 months, reaching 0.06. 1.55 - August 2025, 1.61 - November 2025
Please share any advice or thoughts on what I should do.
1. Continue taking diphereline 3.75
2. Change the ADT drug to a different one
3. Immediately demand removal of my testicles
4. Other options
I've now introduced testosterone-lowering foods into my diet, such as green tea (3 cups a day), mint, and licorice root. I cut out sex completely and started moving less.
I'm terrified of the tests scheduled for mid-January 2026 🙁
Thank you very much, and stay healthy 🙂
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@ddl
Thanks, that right 1.7 nmol/L
@denis76
Is this true Denis
“ suspect his testosterone is being measured in nmol/L, not ng/dl. So you would multiply ny 28.8 to convert. So 1.7 would be about 49”
If that is true, and that is what is happening, then I can see why the doctor wants to remove the testicles. He could try putting you on Zytiga instead of Erleada. It does reduce testosterone further than ADT, but that may not be enough. I’ve only heard of one or two other cases like this where the testosterone doesn’t get dropped to at least below 20.
@jeffmarc
Yes, Jeff, iti is true
Erleada must drop level of testosterone? Erleada working 8 month and instead drop level testosterone his level slowly grow. I reading that
I read that if testosterone levels aren't reduced, then testicular surgery should be performed as a backup. This means that ADT can't combat cancer. The initial PSA level was too high.
I'll get my testosterone and PSA levels tested in two weeks and talk to my doctor.
In any case, I'm already mentally preparing for death, because I understand that ADT isn't working properly, despite lowering my PSA to zero.
Slowly up testostetone (when PSA =0) means hormone-resistant version of cancer and the fact that I have 2-3 years left to live, maximum
Actually Erleada does not drop testosterone at all.
I brought this subject up earlier. Even if you have testosterone. Erleada suppresses testosterone so that it does not allow the prostate cancer to use it. So it keeps the PSA down with testosterone.
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Does Zytiga work the same way as Erleada?
By the way, Jeff, I should tell you. Back when my testosterone level was 1.1, I was very active. I'd get up early in the morning, run 3 km, and walk a lot throughout the day. I walked a lot and did a lot of exercise. I was so tired that at lunch, I'd fall over and sleep for an hour.
Six months later, I changed my lifestyle: I stopped running, stopped walking a lot, and stopped exercising. I'm constantly sitting at home and moving little.
The question arises: did the lifestyle change affect my testosterone? And is there a concept of testosterone utilization with movement? In other words, should I exercise daily or sit still and move little, what do you think?
Besides changing my lifestyle, I changed my diet and started eating everything in sight (meat, ice cream, and everything else). Again, could this have had an effect?
And finally, my testosterone levels haven't changed over the past four months, and the change was 0.06, which seems to be a measurement error. Perhaps I'm wrong in my reasoning regarding the onset of cancer resistance; in fact, my testosterone levels have plateaued. I usually get my testosterone levels tested in the morning, when they're at their highest. Maybe I should get them tested in the afternoon instead? Plus, I've been completely abstaining from sex for two years now. What would happen if I started again? Is there a concept of testosterone depletion?
My erectile function is perfectly fine but I read that prolonged abstinence from sex reduces testosterone synthesis and production, but there are other risks, such as blood stagnation in the genital area and other side effects. I chose abstinence as part of my strategy.
Thank you.
@denis76
Zytiga goes to all of the places that create testosterone in your body and shuts them down. It also has a lot more side effects than Erleada. Those probably wouldn’t be a problem for you since you’re so young. It’s just that your testosterone is so high that I am not sure it would make a significant difference.
If you were riding a bike or any other type exercise equipment that was pushing against your perineum that can raise your PSA a little, But not very much. Maybe .1.
If you are running heavily, it can raise your testosterone walking is unlikely to make any change at all. What you eat will have a minimal effect on your testosterone level.
You should continue to be active and running if possible. ADT causes a lot of fatigue and the way to get around it is to exercise. That’s why I run on the track twice a day. That’s another reason I go to the gym three times a week. Not only will your muscles deteriorate when you are on ADT, but you get fatigue which can be offset by the exercising. I know it sounds like it doesn’t make sense, but it is true and it’s something that we talk about in the online meetings all the time.
Having sex is not a problem if you don’t do it two days before getting your testosterone checked. Even right after it only makes a small change in your testosterone level. The way they measure it where you are it probably would make, at the most, a .1 difference.
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\\ It’s just that your testosterone is so high that I am not sure it would make a significant difference.
Yes, but how can we determine the cause of elevated testosterone levels? Cancer or other factors?
Let me remind you that my doctor, after seeing my testosterone and PSA results, told me that my PSA and testosterone levels were stable and recommended eating foods that lower testosterone. My doctor is a very skilled specialist and works at a leading medical center.
My only concern is that despite changing medications, my levels are slowly rising and not falling, although they should be falling because I'm taking ADT and Erleada. Does this mean I started Erleada too late and the cancer is too late to stop?
I understand there are no answers to my questions. If Zytiga is truly stronger than Erleada, then I need to quickly quit and demand an oncology consultation. Otherwise, I have no chance.
Our healthcare system simply can't physically prescribe Zytiga to me because there's no funding and "they'll send me into space with my monstrous problem."
Yet Zytiga is sold here, but I can't buy it without a prescription! What a contradiction! Double standards: some people can take it, while others can't!
@denis76
Some people do not get the benefit of ADT reducing their testosterone down to zero. It’s rare.
I sure would like to hear what food he says will drop your testosterone. I’ve never heard of being able to do that significantly.
I don’t think switching to Zytiga would help, Don’t make an appointment about that issue because I don’t think he wants you to do it, and usually that’s to get to much below 20 and you are way above that. Zytiga is generic and very inexpensive, Erleada is very expensive.
I think your PSA would be better under control with Erleada.
Your PSA is real low, not really time to change anything.
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