I’m just throwing this out for discussion.
I’m 62 in good over shape and recently started Lupron and Zytiga. I am told I will be on these or some form of ADT for the rest of my life. Since the goal is to eliminate testosterone wouldn’t it make sense to remove the source of it? By doing so one could avoid all the nasty inevitable side effects. Thoughts?
From an old guy to a realitively young guy...
I had the same thoughts after I started on Lupron. I discussed the idea and my intent with my spouse and MO. The MO strongly advised holding off on the procedure, so I decided to wait until I completed my first year of treatment.
Then, a miracle happened and mr. wee willy woke up despite my non-detect levels of testosterone. Now, almost 2 years later I am still able to have intercourse with my wife. For me, waiting brought a priceless gift, but I know that many others on the site are glad that they chopped off their shrinking plums.
Thanks for a great perspective!
After a prostatectomy without nerve sparing and pathology report of G-9 Pca in nerves out of prostate, I had an orchiectomy. My days of erections were done. Even Trimix injections were not effective. Lupron for life to keep my two jelly beans in my sack wasn't a very attractive future. It was the right step for me to take...Bye Boys.
I think it's a great idea. The only reason not to do it is if the side effects of ADT are so onerous that you will need an ADT vacation. I'm told that you can choose the size of the prosthetics.
A little confused by your answer aren't the side effects the result of the lack of Testosterone?
What I'm saying is that some men on lifelong ADT choose intermittent ADT. They find ADT so difficult that they need to take periodic vacations from it. With an orchiectomy, there is no convenient way to take a vacation.
Maybe I can send you a Doc video re ADT.. he emphasizes that nasty side effects are from near zero T, whether physical or chemical castration!!!
I’d be interested in that. Is it on YouTube?
let me see..may ave it open in one of my tabs...aha, here it s....
Have you considered obtaining a second opinion about lifelong ADT for you before you make this decision?
It appears many physicians are moving to that. And even the NCCN guidelines say something like strongly consider. My husband was told lifelong at the beginning of his illness but now his primary oncologist and consultant are suggesting a vacation.
Thank you for response! I have obtained several opinions. They have all reached the same conclusion. I am simply asking the question. I like know every option available. Thanks again!
From what I have seen of the studies there is no long term difference. Admittedly they stopped at about 5 years. I think any study by university would be biased toward drugs because that is their main source of income.
Apologies if this is a dumb question but I'll ask it anyway: what side effects do most men experience after their "guys" are gone? How do these side effects compare with ADT caused side effects?
Thanks,
EdinBaltimore
EdinBmore wrote --- " Apologies if this is a dumb question .... "
NOT DUMB AT ALL.
UNLIKE MOST men, I chose castration (April 2015) immediately!!! My Urologist was reviewing the biopsy/scan results with wife and me and said that I NEEDED to begin with ADT NOW!!! I said NO - I want a bilateral Orchiectomy. In less than 24 hours I had the fastest 10 pound weight loss in my life and sent a recording to audition for the Vienna Boys Choir.
youtube.com/watch?v=_QZcLb_...
p.s. - they said if I wasn't 65yo and bald I would have been great!!!!!! 😃
MY effects were as expected with sweats, hot flashes, muscle loss, endurance loss AND the decline of all things sex related; HOWEVER, with enough mind and will power over no balls I was still able to achieve penetration and orgasm albeit greatly reduced. I never experienced any of the psychological issues many speak about.
Also UNLIKE MOST 5+5 men - I have been on biweekly *T* replacement injections since 2016. I can stop the injections and will go from T = 1,600ng/dL to T < 2.5ng/dL in 4 weeks with side effects returning.
BTW - at T = 1,600ng/dL following injection I feel no different than before the next injection in 2 weeks with my T = 500/600ng/dL
Also UNLIKE MOST 5+5 men - I have been on biweekly *T* replacement injections since 2016. I can stop the injections and will go from T = 1,600ng/dL to T < 2.5ng/dL in 4 weeks with side effects returning.
Interesting, but why couldn't men on ADT do the same thing?
Imagine they can if deemed advisable r.e. their PCa situation.
Love the video
Only kidding about the *audition* of course, BUT the real truth is as I was waking up in recovery I heard a nurse ask --- "How are you doing?"
to which I replied in the HIGHEST Soprano voice I could --- "Very well thank you"
Took her only a second the she started laughing.
Isn't that cheating? 😜
But how did you get a urologist to provide T replacement injections? I still have my 'boys' and prostate but I'm guessing that my T, at age 72, is no more than 350. Wonder what 1600 would feel like. Maybe if my PSA remains stable I should consider T supplementation?
I dropped my urologist right after the Orchiectomy. The *T* replacement is part of my experimental GL10 treatment protocol and the 1,600ng/dL level has little effect for me.
I had the orchiectomy from the get-go. No Lupron ever. No prosthetics. No regrets and several advantages. Intercourse with my wife NOT being one of those advantages. 😎
what were your side effects afterwards?
The castration surgery itself was relatively simple: an incision on either side of my penis at the top of my scrotum for the testes to exit and vas deferans to be severed. Once I was awake (an hour later), I got a ride home with a friend. I was pretty stoned the rest of the day.
The next seven days I felt a little like I had been kicked in the balls. Same type of discomfort where two tubes other either side of my lower abdomen felt like they were in spasm or cramping, but relatively mild. On the seventh day the low-grade tubular cramps stopped abruptly.
On the morning following the surgery, I was unable to remember what sex felt like. Any form or sex. This was immediate and total. A very disconcerting kind of limbo, and no one I could talk with about it. Who could relate? Hard to get other eunuchs to talk.
And this was about much more than just sex. My maleness (assertiveness, steadiness, etc.) evaporated too. These things were the worst side effects. And ones you are not warned about to any extent.
There followed loss of almost all body hair, breast growth, and hot flashes like you would not believe. But that was nothing compared to the dysphoria in which I found myself psychologically. But I have had no bone problems or cognitive impairment.
18 months later, my cancer became castration-resistant and I started on Zytiga and Prednisone. Then came the fatigue. Not just tired, but real and deep fatigue.
Fast forward a few years to when I finally got my oncologist to put me on estradiol (estrogen) patches (.1 mg 2X/wk). My fatigue went away to a great extent, but I still tire easily. I am no longer dysphoric. I can now remember what sex/orgasm felt like! I don’t get erect, but I do feel something again. And I have small, sensitive breasts.
If I had it to do over again, I would do the orchiectomy and immediately start on the estradiol (which I DID request at the time, btw). New research is showing estradiol can forestall or even stop castration resistance from occurring.
NOTE: some men are estrogen sensitive and can get breast cancer from estradiol, so you need to see if you have that genetic situation. I think it’s called the BRCA gene mutation.
FourString WROTE --- " ......... On the morning following the surgery, I was unable to remember what sex felt like. Any form or sex. This was immediate and total. A very disconcerting kind of limbo, and no one I could talk with about it. Who could relate? Hard to get other eunuchs to talk ...... "
Just this morning I brought my lap top to a computer guy and talk wound up getting around to PCa and I told him I had an Orchiectomy. From the get-go this eunuch talks to all.
Unlike FourString, after my Orchie and even before I began the *T* injections I still had erections with penetration and orgasm.
I also play offense as regards my orchie. I’m totally out regarding my lack of gender, etc. I sometimes tell people I’m trans with out the gender.
That's an interesting discussion of side effects. I had a bilateral orchiectomy in March of 2020 after a diagnosis or PSA 248, Gleason score of 9-10 on all 16 cores and metastasis to the dominant iliac chain.
Aside from normal healing from the surgery I had no side effects at all for more than a year. Hot flashes started a few months ago but they are at most a minor inconvenience. There has been no hair loss, breast growth, weight gain or issues with depression or dysphoria to date. My strength may have fallen a bit but I'm not even certain of that. I still work full time and ride my bike 40-50 miles on a regular basis. The option of estrogen patches seems like good advice if the need arises. So far I have not needed any follow up medications. My PSA is being checked quarterly but it remains stable at around 0.5.
Are you still taking Zytiga and Prednisone?
Overall I think those of us who take the orchiectomy route seem to be quite pleased with the decision. I know I definitely am!
Yes, I’m still taking Zytiga/Prednisone, but they’re becoming less effective as my PSA is slowly rising again. It’s up to 1.4. I’m discussing high-dose estradiol with my oncologist.
New research is showing estradiol can forestall or even stop castration resistance from occurring.
Interesting can you link me to the research
TIA
The studies to which I referred:
1. ncbi.nlm.nih.gov/pmc/articl... (mice)
2. pubmed.ncbi.nlm.nih.gov/321... (humans)
There are others, but I didn’t look them up. (Lazy eunuch!)
One question... How would you feel if they found a "cure" or even a way to get permanent remission the month after you have them chopped off?
The loss of my balls GREATLY ENHANCED my bicycling comfort so no regrets. 👍👍
Yeah - for bicycling its one of the greatest advanteges, when the baggy is empty. You will have a wonderfull free feeling, when you will struggle on the saddle....
I don't follow. If I were cured tomorrow I would go get testosterone shots like my trans men.
I also think age has a great deal to do with one's decision to have an orchiectomy. I have no idea how long it would take for them to "un-atrophy (?)" or grow back or return to functioning. Say a few years, since it took that long to atrophy. So if you're young, say 40 to 60, that would be a different calculus from someone in their 70s or 80s. Especially in view of the availability of testosterone shots. Wanting more children might be the decider for some.
So you would forgo a shot every 6 months vs a shot of T every few weeks for the rest of your life assuming a cure.. You have already made your decision so it is hypothetical question for you. I was trying to give Old Guy something to think about.
Actually my Lupron was every 3 months in a doctor's office at around $5,000 each. My trans friend gets his T in a vial along with syringes that he uses to inject himself every couple of weeks, IIRC. His setup looks kind of like an insulin injection kit. A quick Google of T costs came up with about $32 for a 1 ml vial and about $138 for a 10 ml vial.
Nonetheless, you have asked a question it is important for Old Guy to have considered.
I'm in the UK - would you feel the same if there was no financial cost?
After 7 years of Lupron and its side effect of mood swings, I was just over it! Everything had atrophied to the state where I could say I _used_ to be circumcised, I knew nothing would ever return. It seemed a no-brainer: get rid of a body part rendered useless by ADT and eliminate a drug who's side effect was driving me crazy.
Since the US heath "care" system doesn't count house or car and I had minimal retirement income, I qualified for special help. Therefore my yearly costs came to about $70 total for drug costs, premiums and co-pays. So at the time I made the decision, it was based on _my_ Quality of Life and not finances.
If I had had income or a retirement income at a livable level, my yearly cost would have been in excess of $16,000! (x 7 = $112,000+).
BTW, I have had no drugs at all since the end of July. I had the boys removed in April of 2021. I still get several hot flashes daily. YMMV
thanks - that is helpful
there are several threads about this in the archives. Check those out.
no nuts no glory.....just sayin
I made the decision after two discussions with my MO. She indicated ADT for life. As a healthcare professional I couldn't rectify injecting a drug to do what surgery can do. Four months later I don't notice much difference in how I feel. Exercise daily work eight hours, have occasional hot flash.
I'm 73. After 8 years of Lupron I got rid of the boys about 18 months ago. My testosterone has settled at 4. The report on the condition of my testes was that they were totally atrophied so I don't think they'd ever come back. I still get a hot flash a few times a day, usually after eating something sweet (I know, I know, cancer thrives on sugar). I have left the emotional swings behind and my head is clearer. I exercise to keep a little muscle tone.
Since I never had my prostate removed, I still get erections, even after the TURP to open my urethra which my atrophied prostate was choking. At this point, I just have no use for them but it is reassuring to notice one now and again.
MOs freak out at the mention of Orchiectomy, but I think the first reaction is a male thing. Watch and I'll bet they cross their legs when you talk about it 
If you decide to go ahead make sure you talk about prostheses -- I didn't and regret not getting them and now it's a fight to get a urologist to do it.
I think this procedure is more common in other countries, yet my first urologist -- the one who diagnosed me -- offered it instead of Lupron back in 2014 but as my prognosis was 5 years I thought I just keep them for that short time.
You might find comments from Dr. Kelvin Brown from the 2020 virtual conference starting at 10:05 where he discusses orchiectomy for a couple of minutes. youtu.be/RiFnusSsaBc And as for who Dr. Brown is, here is his bio from the video notes:
"Dr. Kelvin A. Moses is Associate Professor of Urology at Vanderbilt University Medical Center, Director of the Urologic Oncology Fellowship, and director of the Comprehensive Prostate Cancer clinic. He is a Phi Beta Kappa graduate of Morehouse College, and received his MD and PhD training at Baylor College of Medicine in Houston, TX. He completed his General Surgery internship and Urology training at Emory University, followed by a fellowship in Urologic Oncology at Memorial Sloan-Kettering Cancer Center. His clinical practice focuses on advanced prostate cancer, including several clinical trials, as well as surgical management of advanced renal, penile, and testicular cancer. Dr. Moses's research is focused on addressing health disparities in urologic cancers, determining the role of health literacy in patient interactions with the health care system, and optimal care for patients with metastatic and/or castrate-resistant prostate cancer."
NOTE: if you don't know, while watching a video on YouTube you can move your cursor over the red line at the bottom of the video will show still images and times. So just scrub across until you see Daryl's face at 10:05 and start there -- or listen to the whole thing, it's quite interesting.
Miccoman wrote --- " .... If you decide to go ahead make sure you talk about prostheses -- I didn't and regret not getting them and now it's a fight to get a urologist to do it .... "
I never entertained the thought of replacement since my manhood (as is often implied) has always been located between my ears and not my thighs. If having balls hanging around makes one feel more secure than by all means replacement is vital for continued Quality of Life.
You could enjoy significant cost savings from eliminating ADT treatments but employment opportunities for eunuchs (harem keepers) seem to be severely limited these days, and you could be left, how shall we say, holding the bag.
I was under the impression that you also get testosterone produced by your adrenals. So if are castrated, I guess prostate cancer could still use that. I think its a relatively small amount compared to the testicles, but not sure how much or what effect it wil have.
I think thats correct.
I think Adrenals produce another type of androgen, not testosterone.
I was told testosterone by Adrenals and have also read and seen on videos'
Same here only the opposite! Go figure. Whatever it is, it’s there.
Being a 5+5, having the Orchiectomy AND getting biweekly Testosterone injections is why I call myself a UNIQUE EUNUCH
Since I take Estradiol, I go by “eunuch with benefits.” Abbreviated: “eubie.”
😍
I have to say I struggle to see the benefits over ADT ( 9 x monthly Degarelix shots here) . I guess cost is an issue depending on health system you are in but any others?
I am still in ‘the science is coming’ positive camp for a cure. My genetics professor from the Royal Marsden in London said those words last year and I am watching trials like the OVM-200 vaccine here in the UK closely.
In addition my Finnish MO is not against ADT vacations in the right circumstances and we have a planned review in July 2023 and it gives me something to look forward to.
At 59 a physical castration is not at all tempting to me!
Im an old Guy of 74 and two years ago i got castrated (after a ladderqurash) and for me its a good life and free feeling with an empty baggy between my thighs!! The life is more easy and i never have regret it, that i told to the doc: Cut them off! - when they wanted to put the inflammated swollen bowls back into their sac after cancer-controlling. The 1. Dez. was my 2. Birthday as an happy eunuch and sometimes my wife and me will make jokes about my new state... so i got for breakfast 2 hard eggs for remembering at my plate, haha!!
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