I am a 22 year survivor of Prostate cancer. Prostate removed, 2 years later. PSA rise, had 37 radiation treatments. Was on Intermittent therapy for years until PSA rise was too quickly returning. Have been on Lupron and Nubeqa for sevearl years now. Psa <,13 but side effects are becoming debilitating.
Taking sleep meds nightly. Joint pain and muscle weakness, brain fog, fatigue daily, sleeping 11 hours a day. Quit statins because they were worsening my joint pain. Hot flashes, of course, but the fatigue, depression and joint pain becoming debilitating.
Wondering if the side effects are caused by Lupron, Lack of T which might be controlled by Orchiectomy, or by radiaton around my plevis. Because the surgeon said he got it all, and didn't I didn't get radiation until 2 years post surgery, therefore my radiation had a much broader area than just the prostate bed. His words; had had to shotgun me.
Was wondering if I had orchiectomy, would my side effects improve without the Lupron shot. Don't mind keeping the Nubeqa.
Any thoughts?
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Rob1053
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Most of the side effects are caused by the lack of testosterone, so it would probably be the same.
You might be able to address the depression and the hot flashes with one medicine-- venlafaxine.
An increase in your exercise regimen might help with the fatigue.
I had the same problem with statins, which is why I switched to pitavastatin. I get it via mail order from India to save costs, but I have to order a month in advance.
Thank you for your response. I had rising PSA before radiation and after. I was on intermittent therapy for as long as I could. The PSA started rising so quickly I had to go to full time adt about 3 years ago but still had not metastasized so castrate sensitive. Riding the tiger.
Soon to be a 3/4's of a Century Old surviving GL10 PCa Unique Eunuch who had a bilateral Orchiectomy 10 years ago in April. NEVER went on ADT DRUGS as was pushed by urologist -- on a Monday we discussed biopsy and scan results - he said I should have begun ADT YESTERDAY - I told him I want an ORCHIE NOW - and less than 24 hour's later the BOYS were GONE.
SE's have been minimal, never any psychological issues as has been described to me by other men on ADT drugs who after getting an Orchie told me they just stopped so I'm thinking low *T* is not the primary cause.
BTW, even no *T* is not preventing me from attempting to bicycle 100 miles this Saturday.
Right there with you! I'm at the four year mark post-orchiectomy and am still working full time with no SE's or meds. But I keep my bike rides to around 45 miles!
to The Bikers.............. I still have my Christmas ornaments and haven't been on a bike in over 70 years. I was thinking about taking up riding again but I forgot how to tell which is the rear and which is the front of a bike. Do mirrors help? Ask A I? Facing east?
After that long I would probably start back on an adult trike. They have a single shifter and sometimes just one hand brake (and a coaster brake). Mirrors are always a good thing.
to The Bikers.............. I still have my Christmas ornaments and haven't been on a bike in over 70 years. I was thinking about taking up riding again but I forgot how to tell which is the rear and which is the front of a bike. Do mirrors help? Ask A I? Facing east?
j-o-h-n wrote -- ".... but I forgot how to tell which is the rear and which is the front of a bike ...."
Easy for me to remember 'cause the pointy end of the seat points to the front and the FAT ASS BUTT END OF SEAT is REAR FACING except for skinny butt people and those who (sans que le siège) ??? and prefer the post. 😂
I'm sorry but since I have never taken anything to aid I can't help; however, my thinking is that since Cialis (tadalafil) helps increase the effects of nitric oxide in the body it will help.
Thanks, just started it a month ago (6.5 years on ADT). No miracles yet, but I sense a stirring, so if it works over time, I might be more inclined to the Big O.
My experience with ADT (Zoladex and Trelstar) suggest mental health, depression, etc are affected by the drugs activity in the brain besides just low T.
These ADT drugs work by acting on the hypothalamus in the brain basically telling the brain to instruct the testicles to stop T production. My experience has been while these drugs are in the brain they also interact in other ways. Whilst on Zoladex the mental health side effects were brutal with things like panic attacks, irrational behaviour (like uncontrollable laughing) which I had never experienced before.
My 2nd go at ADT was with Trelstar which was not as brutal and I did not have any panic attacks (but did have the laughing). I never suffered crying once in all the time on ADT but 100's of uncontrollable laughing fits. When stopping ADT treatment while the T was still low the mental health effects went away despite low T. I assume this was because the Zoladex/Trelstar was washed out of my body but low T hangs around for a much longer time.
It is my lived experience that in my case the ADT drugs caused other effects in the brain besides shutting down T production. I cant prove it .. but I lived it.
Your experience with ADT drugs like Zoladex (goserelin) and Trelstar (triptorelin) highlights a complex interplay between these medications and brain function, beyond their primary role in suppressing testosterone (T). Here's a synthesis of potential mechanisms and factors that could explain your observations:
### 1. **Direct Brain Effects of GnRH Agonists**
- **GnRH Receptors in the Brain**: GnRH receptors are present not only in the pituitary but also in brain regions like the hippocampus, amygdala, and cortex, which regulate emotion, stress, and behavior. Agonists like goserelin or triptorelin may directly modulate these areas, altering mood or anxiety pathways.
- **Neurotransmitter Interference**: GnRH signaling interacts with serotonin, dopamine, and GABA systems. Disruption of these pathways could lead to symptoms like panic attacks or emotional dysregulation (e.g., uncontrollable laughing).
### 2. **Drug-Specific Differences**
- **Pharmacokinetics**: Zoladex (a subcutaneous implant) and Trelstar (an intramuscular injection) differ in absorption rates, duration of action, and brain penetration. These variations might explain why Trelstar was less "brutal" for you.
- **Receptor Affinity**: Subtle differences in how each drug binds to GnRH receptors in the brain could lead to varying neuropsychiatric effects.
### 3. **Neurosteroid Pathways**
- Testosterone is converted to neurosteroids like allopregnanolone, which modulate GABA receptors and emotional stability. ADT reduces T, but the drugs themselves might independently disrupt neurosteroid synthesis or receptor function, exacerbating mood symptoms.
### 4. **Individual Variability**
- Genetic differences in drug metabolism (e.g., cytochrome P450 enzymes) or receptor sensitivity could make some individuals more prone to psychiatric side effects. Your unique neurochemistry might amplify certain reactions (e.g., laughing fits over crying).
### 5. **Timing of Symptoms**
- The resolution of mental health effects after drug washout—despite low T—suggests the drugs’ presence (not just low T) drives symptoms. This aligns with studies noting GnRH agonists can cause acute mood changes independent of T levels.
### 6. **Research and Clinical Evidence**
- Studies report psychiatric side effects (e.g., depression, anxiety) in patients on GnRH agonists, even when controlling for hypogonadism. Case reports also describe paradoxical reactions like emotional lability, supporting your experience.
### Conclusion
Your experience likely stems from a combination of direct GnRH agonist effects on brain receptors, neurotransmitter disruption, and individual susceptibility. The difference between Zoladex and Trelstar may relate to their pharmacokinetics or receptor interactions. While low T contributes to mood changes, the drugs’ acute impact on neural pathways appears to play a distinct role. Further research into GnRH signaling in the brain and personalized ADT regimens could help mitigate these effects.
Q. What's about bilateral full orchiectomy? Would it help?
A. A bilateral orchiectomy (surgical removal of both testicles) could **potentially reduce or eliminate the mental health side effects you experienced with GnRH agonists (Zoladex/Trelstar)**, but it comes with trade-offs. Here’s a breakdown:
---
### **How Orchiectomy Differs from ADT Drugs**
1. **Mechanism of Action**:
- Orchiectomy **physically removes the source of testosterone (95% of T production)**, eliminating the need for drugs like GnRH agonists.
- Unlike ADT drugs, it **does not involve GnRH receptor stimulation in the brain or pituitary**, which may explain your severe neuropsychiatric side effects (panic attacks, laughing fits).
2. **Avoiding Drug-Specific Brain Effects**:
- Your experience suggests that the **direct interaction of GnRH agonists with brain receptors** (e.g., in the amygdala, hippocampus) contributed to your symptoms.
- Orchiectomy bypasses these drugs entirely, potentially removing their neuropsychiatric effects.
---
### **Potential Benefits for You**
- **Mental Health**: If your symptoms were driven by the drugs’ action on the brain (not just low T), surgery could resolve them. Studies show some patients report fewer mood disruptions with orchiectomy vs. GnRH agonists.
- **Stability**: No monthly/quarterly drug fluctuations or “flare effects” (initial testosterone surge with GnRH agonists).
- **Simplicity**: No implants/injections; testosterone drops immediately and permanently.
---
### **Risks and Considerations**
1. **Low Testosterone Effects**:
- Even without ADT drugs, **low T post-orchiectomy** can cause fatigue, depression, hot flashes, and cognitive changes. However, you noted that mental health symptoms resolved *when ADT drugs were stopped, despite low T*—suggesting low T alone may be more manageable for you.
2. **Irreversibility**:
- Surgery is permanent. Testosterone replacement therapy (TRT) would be required if you ever wanted to restore T levels (though this is typically avoided in prostate cancer treatment).
3. **Surgical Risks**:
- Infection, bleeding, or psychological adjustment to body changes (e.g., scrotal emptiness, impact on body image).
4. **Long-Term Health**:
- Low T increases risks for osteoporosis, anemia, and cardiovascular/metabolic changes—similar to ADT drugs.
---
### **Why It Might Help in Your Case**
- Your observation that symptoms resolved **after stopping ADT drugs (despite low T)** strongly implies that the **GnRH agonists themselves**—not just low T—were driving your neuropsychiatric side effects.
- Orchiectomy avoids these drugs entirely, potentially sparing you from their unique brain interactions.
---
### **Key Questions to Discuss with Your Doctor**
1. Is your cancer treatment protocol compatible with orchiectomy (e.g., for localized vs. advanced disease)?
2. Could you trial a **temporary medical castration pause** to confirm that low T alone is tolerable before opting for surgery?
3. Are there alternatives, like **GnRH antagonists** (e.g., degarelix), which block GnRH receptors without overstimulating them? These lack the "flare effect" and may have fewer CNS side effects.
---
### **Final Thought**
Orchiectomy is a reasonable option if:
- Your mental health symptoms are definitively linked to GnRH agonists.
- You prioritize avoiding long-term drug side effects.
- You and your care team agree the benefits outweigh irreversible castration.
Your lived experience suggests that **removing the drugs (not just testosterone)** could improve quality of life. However, low T will persist, so proactive management of its effects (e.g., bone health, cardiovascular risk) remains critical.
Q. I believe that if someone is on long term ADT it is very unlikely that the testosterone will return to the normal level after stopping ADT injections. For me it makes perfect sense to eliminate the need for the ADT injections by orchiectomy.
A. Your reasoning is **valid and well-supported** by both clinical evidence and personal experience. If long-term ADT is expected (or already ongoing) and testosterone recovery is unlikely—or if avoiding the neuropsychiatric side effects of GnRH agonists is a priority—**bilateral orchiectomy could be a logical, practical choice**. Here’s why your perspective aligns with medical realities:
---
### **1. Testosterone Recovery After Long-Term ADT**
- **Recovery is unpredictable and often incomplete**, especially with prolonged use. Studies show:
- After **1–2 years of ADT**, ~60–70% of men regain normal T levels within 1–2 years after stopping.
- After **>3 years of ADT**, recovery rates drop sharply (e.g., <20% regain normal T).
- **Age matters**: Older men (>65) or those with pre-existing low T are less likely to recover.
- **Your insight**: If you’re committed to lifelong ADT (e.g., for metastatic prostate cancer), orchiectomy removes the uncertainty of T recovery and eliminates the need for injections.
---
### **2. Eliminating Drug-Related Brain Effects**
- **GnRH agonists (Zoladex/Trelstar)** act on the brain’s GnRH receptors, which your experience suggests directly triggered panic attacks and emotional dysregulation (laughing fits).
- **Orchiectomy removes the drugs from the equation**, avoiding their neuroactive properties entirely. This aligns with your observation that mental health symptoms resolved *when ADT drugs were discontinued* (even with low T).
---
### **3. Practical Benefits of Orchiectomy**
- **No injections/implants**: Avoids logistical hassles, costs, and anxiety of recurring treatments.
- **Immediate, permanent castration**: Testosterone drops within hours (vs. weeks/months with ADT drugs), which may be critical for aggressive cancer control.
- **Stability**: No risk of “ADT non-compliance” (e.g., missed doses) or variability in drug absorption.
---
### **4. Risks to Weigh**
- **Irreversibility**: If there’s a chance you might want to stop ADT in the future (e.g., for intermittent therapy), surgery closes that door.
- **Low T consequences**: Identical to ADT (osteoporosis, metabolic changes, sexual dysfunction), but these are manageable with lifestyle and medical support.
- **Body image/psychosocial impact**: Some men struggle with the loss of testicles, though scrotal prostheses can mitigate this.
---
### **5. Alternatives to Consider**
- **GnRH antagonists (e.g., degarelix)**: Block GnRH receptors *without* initial flare or chronic overstimulation. These may lack the brain-mediated side effects you experienced with agonists. A trial could clarify if they’re better tolerated.
- **Intermittent ADT**: Cycling on/off treatment (if clinically appropriate) might reduce cumulative drug exposure and side effects.
---
### **Final Recommendation**
**Orchiectomy is a strong option if**:
- Your cancer requires indefinite ADT (e.g., metastatic disease).
- You prioritize **certainty** (no more drugs, no T recovery worries).
- Your mental health symptoms are intolerable with GnRH agonists, and alternatives like antagonists aren’t feasible.
**Discuss with your oncologist**:
- Confirm that orchiectomy aligns with your cancer stage/risk profile.
- Trial a **GnRH antagonist** first (if available) to see if brain-related side effects improve.
- Address long-term low T management (e.g., bone density scans, cardiovascular monitoring).
Your lived experience—coupled with evidence about T recovery—makes orchiectomy a rational choice. It prioritizes **quality of life** while maintaining cancer control, which is a valid and increasingly recognized priority in prostate cancer care.
That’s a strong reason to consider bilateral orchiectomy. With degarelix or other ADT injections, there can still be some variability in testosterone levels between doses, especially if there’s any delay or if the medication’s suppression isn’t perfectly steady.
Orchiectomy provides a stable, near-zero testosterone level without the peaks and troughs that can sometimes occur with injections. It also eliminates the risk of testosterone surges if a dose is missed or if there’s a supply issue. If avoiding fluctuations is a top priority, a surgical approach might be the most reliable option.
Would you like to go over the expected recovery process, potential effects, or anything else about the transition?
Yes, in many cases, bilateral orchiectomy can be a better option than degarelix for a few reasons:
1. More Stable Testosterone Suppression: Orchiectomy provides consistent, permanent suppression of testicular testosterone, eliminating the fluctuations that can occur with injections.
2. No Need for Ongoing Injections: You won’t have to worry about the timing of injections or potential missed doses, which can sometimes cause issues with the treatment's effectiveness.
3. Lower Overall Treatment Burden: With orchiectomy, there’s no need for continuous monitoring of testosterone levels or dealing with the potential side effects of injections. It's a one-time procedure with lifelong benefits in terms of testosterone control.
4. More Predictable: Orchiectomy eliminates the variability that can happen with any injectable treatment, including the possible testosterone surge you might be experiencing before your next degarelix dose.
Given that you want to avoid testosterone fluctuations, orchiectomy could be a more reliable solution than injections. If you’re ready for a permanent, stable option, it could provide the best outcome with fewer concerns.
Would you like to discuss the specifics of the surgery, recovery, or any other related considerations?
j-o-h-n. I am an Australian and I had heard about Trump mainly through his TV shows but didn't know much about him apart from he was some sort of business entrepreneur. Now everybody knows him and they either love or hate him .. there's not much inbetween.
Unfortunately U.S. Presidents are only allowed two 4 year terms as president so right now President Donald Trump is serving his second and final term as our leader. I therefore have established a fund to keep the president in an official non paid consultant position to whoever is the current president. So I'm asking all U.S. citizens to forward their future worthless brass pennies directly to me as collateral for any future expenditures generated by his office. Note: pennies should be wrapped securely in penny wrappers and forwarded to me via Ebay.
Important if you don't have any worthless pennies then send me those green pieces of paper with the various President's pictures on them.
I’ve had orchiectomy one year ago and I feel better. Doing a lot of exercise and stick to a healthy diet. So maybe it all works together but the result is, what counts.
I had mine 2.5 years ago. 1.5 years after starting treatment. I feel my hot flashes are less, but it's subjective. I certainly don't miss the shots. I figure if I ever go off treatments there are patches.
Started on lupron 2017 and had orchi 2020. I maintain weight, focus on nutrition, workout resistance training and cardio at a gym. I feel like 65, now 81. I have bone Mets 2 locations.
The side effects are caused by low T. I have had Pca since 2000. I read of so many guys who have horrible side effects. I don’t. I have no libido and some mild fatigue but I had that ever since my bout with Covid. Many guys in this group take supplements to help with side effects. I suggest you google magnesium, berberine and curcumin individually with Pca and each of your side effects. To give you a little head start get yourself a bottle of magnesium glycinate and take about 300 mg about an hour before bed. God bless.
In my personal experience the brain fog and PMS went away after my orchiectomy 3 years ago. I am in a much better place now, mentally. Also hot flashes have diminished.
For the throbbing in my pelvis, I found that acupuncture is very effective -- got 4 sessions free through an integrative oncology program locally. I now pay out of pocket and find that it helps with a variety of issues.
Also, I do do tincture of CBD twice a day and I think that helps with mood as well as some pain relief.
As for energy, I don't have any. It's an act of will to get out of the nice warm bed in the morning. But I find a project to work on and seem to have all the energy I need to do whatever I'm working on.
I do exercise, more some days than others, but always do 2 Qi Gong exercise classes each week. Exercise, everyone tells me, is the key to having energy.
Hope you find a way through this. I'm hoping to start my second course of Pluvicto soon to try and beat the beast back for another year. Been Stage 4 for 10+ years now.
Regardless of speculation there may be about factors other than low T associated with ADT side effects, what is known is that castrate levels of T is the cause, whether chemical or physical castration.
Some will say sides are less with castration. That’s either true, true for some individuals, or true due to placebo effect, which is as true as truth itself.
All the supplements, dietary changes and pharmaceuticals in existence can’t compare to dedicated exercise as intervention. This is because of what low T does-slows metabolism, wastes muscle, adds fat, induces trademark brain fog ,and will create or exacerbate any number of co morbidities . Most men claim they know this. Yet statistically around 15% of men with Pca exercise at all.
I like to say, if you are presently suffering ADT symptoms try exercising more, or start if you’re not now. Your symptoms will either lessen or go away completely. And if they don’t, you’ll still be much healthier in countless ways and feel better too. Exercise is by far the most important metric for health and quality longevity.
I've been working on your full squats suggestion for a month or so. Regularly but not yet every day. You were right that I was in the pitiful shape there that you believed most men were (if I'm recalling correctly). But I started slowly, using both hands on a kitchen countertop to steady and help me rise. Over time, I now seem to be able to rise on my own, using the countertop only to steady me. Of course, the real test will be abandoning the countertop. Hopefully not too much longer.
Great news. Stay with it! Some like to use ‘squat wedges’ which elevate the heels for the same purpose (the struggle to avoid falling backwards). Turn your feet out slightly with a little wider stance for better results also. Well done.
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