Considering surgical castration - Advanced Prostate...

Advanced Prostate Cancer

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Considering surgical castration

katartizo61 profile image
94 Replies

Next Tuesday I have a surgical castration consult. Quick history. Diag May 28th Stage 4 Gleason 9, PSA 1065. Casodex and Lupron. Diet changes and supplements provided if your interested. Off Casodex in about 6 weeks and on Zytiga and Lupron as well as bone building infusions. Treatment same to this day. Current PSA .5. I am physically tolerating treatment with the exceptions of muscle fatigue and hot flashes which I do not expect to change much with surgical castration. I see all the good men dealing with chemo castration failure and figure a life time of chemo castration of get er done. Thoughts welcome

Thank you and Merry Christmas!!!!!

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katartizo61
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94 Replies
Magnus1964 profile image
Magnus1964

I had the orchiectomy as a first line treatment. The way your doctor is burning through your drugs options, I would go for the orchiectomy.

katartizo61 profile image
katartizo61 in reply to Magnus1964

I understand this is standard care in most countries. What follow up regime are you on? My MO and I have not approached this as yet. *

Magnus1964 profile image
Magnus1964 in reply to katartizo61

After the orchiectomy I have had radiation therapy, then ADT drugs for the last 29 years.

katartizo61 profile image
katartizo61 in reply to Magnus1964

29 YEARS!!!!!!! I understand the continuation of the ADT drugs, IDK if they would recommend radiation, hoping not

in reply to katartizo61

Magnus has 29 years in . He’s a miracle man!’

in reply to katartizo61

Imrt and double adt worked for me six years now. Dropped Lupron four years back with an orch! 😳

Pops78 profile image
Pops78 in reply to Magnus1964

Any UA problems after your surgery?

Magnus1964 profile image
Magnus1964 in reply to Pops78

Not after the orchiectomy.

Pops78 profile image
Pops78 in reply to Magnus1964

humm, my hubby had some prior to the surgery but I think worse after?

Magnus1964 profile image
Magnus1964 in reply to Pops78

RP or orchiectomy?

Pops78 profile image
Pops78 in reply to Magnus1964

Orchiectomy. Has had no RP

Magnus1964 profile image
Magnus1964 in reply to Pops78

He might need a trans urethral resection.

Herman_PSA_OK profile image
Herman_PSA_OK in reply to Magnus1964

Hi Magnus! Question about bilateral Orchiectomy. If someone has beeen on ADT for few years and progressed to Abiraterone for one year (five bone mets) and the PSA is slowly starting to rise again, is there any value to having or even possible getting a bilateral Orchiectomy? In other words, is it too late to even consider and you would gain nothing? Looks like I'm starting to see another pivot point in my treatment. What would you do?

Thank Herm

Magnus1964 profile image
Magnus1964 in reply to Herman_PSA_OK

If you do not respond to Gonadotrophin-releasing hormones (i.e. Lupron, etc), then an orchiectomy would not be recommended.

katartizo61 profile image
katartizo61 in reply to Magnus1964

If I understand correctly what you shared with Herm, if a man is responding the lupron and zytiga, you might be suggesting there is little or no benefit to castration???

Magnus1964 profile image
Magnus1964 in reply to katartizo61

Just the opposite. If you are responding to Lupron you could receive a benefit from an orchiectomy. Zytiga aside.

katartizo61 profile image
katartizo61 in reply to Magnus1964

Thank you, mine is scheduled Apr 01, 2022. I appreciate your input and knowledge!!!

Magnus1964 profile image
Magnus1964 in reply to katartizo61

Good luck.

Welcome KaT! If you’re from 61 like me ,salud amigo . I started this #4 gl+4+4 ,t-4 over six years ago . When my pc specialist told me Testosterone will kill me I said” off with the juevos”! He had me wait for a 18 months “to be sure “ he said . I was told shots for life and I’d be dead in 36 months at most. . I did imrt Lupron and Tak -700 that I’m still on today . My Uro was pissed that i was beyond surgery . He was so happy to chop chop and to make a little scratch off of me . As I entered surgery he was standing with his other surgeon cohorts and said” This guy here does not want to come and see me every three months for the rest of his life for shots” . They all nodded in unison . I had a few months of feelings of worthlessness and being put out to pasture . I suffered some depression for my first three years . Most guys are on mood meds or sleeping aids or pain meds or all three . Thankfully I’m on none of that yet . Now weed is legal . I make my own high thc oil to use daily and I smoke to relive nausea and promote my appetite and help my moods . My boys were shrunken tiny and painful . Iwas casterated chemically . For me it was like trimming dead wood from a tree . The tree is better off with out it . I have friends that tell me they’d rather die than chop the boys . I choose life and dropped the lupron shots . Best decision I made in this mess . Se la ve . I can scale tall buildings now and jump barbed wire fences with no fear of the family jewels . Theyre now just an afterthought after 4 years Being Mia. Heal yourself however you feel fit . It’s your life ., Good luck pushing apc far away for many years ! 👍

katartizo61 profile image
katartizo61 in reply to

Absolutely agree. I have female family members with breast cancer and each said chop em off I don't need them any more. If the end result is castration!!!! what's the point or benefit of a life-time of medicine??? Merry Christmas!!!!!

in reply to katartizo61

Amen Kat ! You do you , and live life ! Good luck proceeding! Merry Christmas . 🎄 Next year I’m hoping that you will have a great as possible outcome.. we tread water! Take care young man 🙏

Shooter1 profile image
Shooter1 in reply to katartizo61

Yep, off they went... Now I have 'boobs' your family members could have if they can find a transplant dr and our DNA matches close enough.... Life Is Good with out Lupron for life.

addicted2cycling profile image
addicted2cycling in reply to

Lulu700 wrote --- " ... When my pc specialist told me Testosterone will kill me I said” off with the juevos”! He had me wait 18 months "to be sure" he said... "

April of 2015 during a Monday morning consultation following biopsy and scans my urologist told me I needed "ADT starting NOW" and I told him "no ADT, I prefer instead an Orchiectomy NOW" and just 24 hours later the BOYS were gone.

in reply to addicted2cycling

Boy! That was quick service ..✌️😂 I was on the Tak -700 drug trial with Lupron . An immediate orch wasn’t on the list then for me . ✊🏻🧐

addicted2cycling profile image
addicted2cycling in reply to

The urologist's jaw hit the ground followed by *but-but-you know there will be no more T ever again and no more ------ * He had his assistant call for a pre-op appointment/scheduling right then and the pre-op was done 4 hours later with Orchiectomy next day.

My non SOC treatment protocol for Gleason 10 might very well kill me sooner rather than later but getting the Cypionate shots bi-weekly has proved to be an interesting experiment and will see where it leads.

in reply to addicted2cycling

It’s you life . You took control . Keep riding ! 🚵🏼‍♂️🚵🏼‍♂️🚵🏼‍♂️

I chose to have my beauty's loptd off five years ago,after failure of prostate removal. Seminal vessel and nerve bundle invasion....then a month of salvage radiation that failed. I chose the 'ork' because I had one shot of Lupron and didn't like the evil feeling of that shit running though my body. I've been running on 0.04 since then. I can't say what it may do for you bro but it's probably worth considering. I wish you all the best with whatever road you travel. Go well

katartizo61 profile image
katartizo61 in reply to

Thank you!!! I have decided and will choose surgery instead of life time Lupron with a chance of resistance. Merry Christmas

maley2711 profile image
maley2711 in reply to katartizo61

I believe the resistance would not be to the Lupron, but that cells mutate and become castrate resistant.....whether ochiectomy or chemical castration....but maybe I misunderstand?

katartizo61 profile image
katartizo61 in reply to maley2711

IDK for sure maley, on Zytiga and Preg as well. Understand there will be followup meds of some kind. Plan is in discussion

in reply to katartizo61

Merry Christmas to you too bro.....

Pops78 profile image
Pops78 in reply to

Have you had any other treatments during this 5 year period? My husband had an orchiectomy in July this year and his PSA has been dropping since then, from 68 to last one in Nov. of 0.4. He does have mets to bone. His MO wants him to take Nubeqa.

in reply to Pops78

Hey there,I have had no other treatments since the 'ork' then other than a drug called Cyproterone Acitate that controls hot flushes. I have ongoing Ostio Arthritis back hip knees etc so oxcodone,oxynorm and pregabalin for nerve pain... I have used cannabis religiously in oil form every night for 7 years now. I don't worry about what people say regarding the worth or unworthiness of cannabis as that's my personal road. And I've always said I will walk my walk with this evil shit but conventional medicine walks with me also...without it I wouldn't be here now. All the very best my friend on what is ahead of you,God's blessings to you and yours....🎶❤

katartizo61 profile image
katartizo61 in reply to

Thank you Dave!!!!! Very well wishes for you as well. Looking curiously to my 15th MO appointment and see what he says about meds. Hot flashes for me come and go, nite sweats the same. Really in touch with my female friends LOL. I might seek alternative care for your pains, maybe try a deep butt massage and if that helps let me know. Be well, Merry Christmas

in reply to katartizo61

Ha,yes massage would be great, but alas I live alone and rural...so I think to hard to find a suitable massuesse. Merry Christmas to you as well.

katartizo61 profile image
katartizo61 in reply to

OK fair enough. try this: I do every day healthline.com/health/pirif...

in reply to katartizo61

Thanks for that info....I'll let you know how it goes. 👌

I had it done and have no regrets.

in reply to

No returns 😂😂👏👏👏

in reply to

This may be going a bit to far, but between the chemical castration and the finality of true castration….the hot flashes, and I’m starting to notice some breast enhancement…oh, and I have a penile implant. The circus is gone…So it’s starting to make sense that I start a “PC” Drag Queen comedy hour event here in Charleston, SC. I think it’ll draw a crowd. Anyone on board?

in reply to

Hec no! I’ve got my own freak show going on here that no one wants to witness . 😂😂👏👏👏😳

in reply to

I like freak shows!

katartizo61 profile image
katartizo61 in reply to

maybe no real difference chemo or surgical to the hot flashes and changes???

in reply to katartizo61

For me the hot flashes come and go…but without testosterone, you can expect them to persist. The thing is, however, they do become more infrequent

katartizo61 profile image
katartizo61 in reply to

Thank you!!!! Balancing those flashes is quite a trip. IF I get anywhere I will share. Happy they do slow down...Merry Christmas!!!

in reply to katartizo61

Merry Christmas!!!

anothercyclist profile image
anothercyclist

I was diagnosed with mPCa with local spread to lymph nodes in January of this year. PSA was 248, Gleason sores 9-10 on all. The idea of years of shots did not appeal to me, particularly since there are fewer side effects with an orchiectomy. I was off work for 1 1/2 days and had no other problems. PSA dropped rapidly at first and is now 0.57 and dropping around 0.02 to 0.03 per month. My oncologist suggested that we might look at chemo but I am not going that route unless the PSA starts to rise or a scan shows new cancer growth.

in reply to anothercyclist

Bravo ! Here’s to our nut less success. ,👏👏👏👏🥳😳

katartizo61 profile image
katartizo61 in reply to

😱😂 Merry Christmas

in reply to katartizo61

😂👏🏋🏽‍♂️

CSHobie profile image
CSHobie

Kat, as you know in North America getting the Orchiectomy is quite unusual.

I was newly diagnosed at age 52 PSA300 looking at lifelong ADT, same as what you are being told.

After about 6 months of shots, I opted for bilateral Orchiectomy, my PSA dropped really fast, and thank God is still extremely low now one year post surgery.

For me I still think it was the right choice. I wish I could say there's a huge improvement in how I felt on shots vs now, I think it's similar, but I believe there are benefits in the future, hopefully.

in reply to CSHobie

Hobie ,I think it’s easier on the heart ? Plus shots suck . ✌️

katartizo61 profile image
katartizo61 in reply to

Thanks Lulu Less drugs and very likely less destruction to the heart less work for the liver/kidneys, good point

in reply to katartizo61

That is my hope .

katartizo61 profile image
katartizo61 in reply to CSHobie

CSHobie I get the side effects of Lupron. So far using methods of my energy medicine knowledge I have been able to balance most of all of them. I think since it's life-time less medication is likely to be best. With the same physiological effects either way, a no brainer.

in reply to katartizo61

My elderly mothers Beloved Dr Rogers said the same about me . “ it’s a no brainer” addios T! 😫

Shorter profile image
Shorter

I had a botched RARP 4 years ago for 4+5=9 cancer and it caused something I couldn't live with. When the cancer came roaring back like a freight train last year I had Lupron + radiation. After a few months of Lupron I had the whole bottom end refurbished to permanently remove testosterone and fix the damage done by the first surgery. It was a choice I had to make and I have not regretted it. Taking maintenance estrogen now and boobs are growing. Life sometimes gives you lemons. I made lemonade.

katartizo61 profile image
katartizo61 in reply to Shorter

Thanks Shorter!!!

ctflatlander profile image
ctflatlander

I'm 78 had it done 8mos ago after being on Lupron for 3 1/2 yrs. At the time my psa was slowly rising to 1.1 and over the last 8 mos it has been steadily decreasing to .38 Will see my MO to under stand the decline. Not complaining!

katartizo61 profile image
katartizo61 in reply to ctflatlander

Thank you!!!!!!!!

CSHobie profile image
CSHobie in reply to ctflatlander

Thanks for your reply, the fact that your PSA came down after being on Lupron for years, it makes me think that when Dr s say the two types of castration are equivalent, that really isn't the whole story.

ctflatlander profile image
ctflatlander in reply to CSHobie

I agree. No other changes in lifestyle or diet. I'll be getting another test in 2 weeks, hopefully it continues on downward slope.

spencoid2 profile image
spencoid2

Just one more word of support for orchiectomy. I got mine "clipped" two months ago and have no regrets. Still have the effects of 0 testosterone but I believe I feel generally better not getting the monthly injections of Firm is Gone. I even had a dream last night that I had an erection but it was just a dream.

in reply to spencoid2

Monthly shots really suck . I thought tri month was bad ? ✌️😳

katartizo61 profile image
katartizo61 in reply to spencoid2

thanks spencoid2. makes too much common sense and seeking someone to disagree with me has lead to a dead end. Bonus

CSHobie profile image
CSHobie in reply to spencoid2

Sadly I know exactly what you mean.

Out of 14000 member us orchs are few . Everyone is on adt .. The stigma I assume?

LifeQuality profile image
LifeQuality

I don't want to be the sole negative voice in this discussion, but I'm having doubts about proceeding with my orchiectomy (I'm on the waiting list for this "elective surgery"). The best thing I can say is: decide WHY you want the orchiectomy. Is it only to avoid Lupron or equiv. for the rest of your life? Or other reasons? I was convinced by the wonderful men on this platform to choose orch. specifically because of the reduction in side effects over Lupron. However, I've had conversations with my urologist and 2 oncologists, and all 3 state that there is no data to show that orch. is any better than shots, in terms of SEs; meanwhile, even though orch is a low-risk surgery, it's still surgery, which in and of itself has some level of risk (from anesthesia, infection, etc.) So in my case, if the ONLY reason for surgery is to avoid shots, I'm thinking of cancelling the orch. Lupron costs me nothing (thank you Medicare!) and the nurses in the oncology infusion center, conveniently just 7 min from my house, are wonderful. So this is like everything else in the world of PCa: each case is unique. You need to decide WHY you want the procedure.

katartizo61 profile image
katartizo61 in reply to LifeQuality

Thank you, I field different points of views and opinions. For me, as you asked, the Lupron effects short and long term are a motivation. For me less meds is better, if!! there is a long term. That's my training and philosophy. Consult Tuesday. Merry Christmas

CSHobie profile image
CSHobie in reply to LifeQuality

LifeQ, Yes Dr s say it's about the same thing, if you believe that. I don't believe that Lupron has no additional side effects.

However in my experience, the benefits of Orchie, vs Lupron is not felt immediately, and therefore not easy to justify. In the end, it's really your personal choice.

LifeQuality profile image
LifeQuality in reply to CSHobie

Thanks for your thoughts. I feel the same way; i.e., that it "seems logical" that 'no drugs is better than some drugs', because ALL drugs have SEs. The thing I'm grappling with is that there is a dearth of studies validating this--probably because nobody will pay a scientist to investigate, and possibly conclude, that drugs AREN'T necessary! Not the drug companies! On the other hand, I have seen studies (cited on MaleCare) that show that a variety of metabolic conditions common to ADT (e.g., increase in visceral fat, subcutaneous fat, etc.) are worse after orch than on agonists. I sure would like to see studies that show that orch is measurably better than staying on shots. Thanks again!

anothercyclist profile image
anothercyclist in reply to LifeQuality

Here are two links which discuss the advantages of bilateral orchiectomy:

cancertherapyadvisor.com/ho...

healio.com/news/hematology-...

katartizo61 profile image
katartizo61 in reply to anothercyclist

Thank you very much. Yesterday I consulted my urologist and he concurred. Although I can not wrap them and give them to someone for Christmas LOL, March

LifeQuality profile image
LifeQuality in reply to anothercyclist

Thanks for your reply. Both articles you cited are about the same study. Unfortunately, my MO and urologist both reject this info as being "old" (who cares if it's a good finding, but whatever) and as being too narrow of a population. As I replied to CSHobie, I sure would like to see studies that show that orch is measurably better than staying on shots. But that's not likely to happen, since nobody will pay a scientist to investigate, and possibly conclude, that drugs AREN'T necessary! Not the drug companies! Thanks again.

katartizo61 profile image
katartizo61 in reply to LifeQuality

Love the conversations. One of my deciding factors is the great numbers of castration resistant men now are on several more different et drugs to control a controllable condition. No not enviable by any measure however common sense to me. Side effects are about the same. For me my physcial stamina is a problem attempting exercises as well as the joint problem restrictions. Going to assist my body with some creatine and see if that helps

hanseunuch profile image
hanseunuch

Hey, Katartizo, how are you now?

i was castrated the 1. Dez. 2o2o, one inguinal and the other scrotally, because no cancer was found. I had some trubble with pus over more than a month, but than all was okay.

Today i feel me wonderfull and as an proud Eunuch! Icant explain it, but it is so! At first i wanted silikons in my empty sac, but there no one was stocked, and today i want it never.

Its a good feeling with my litle empty sac and i have no shame to show it in gym, shower or sauna. perhaps the castrated level is the highest male???

katartizo61 profile image
katartizo61 in reply to hanseunuch

Thank you so very much, looks like April01 is the date

hanseunuch profile image
hanseunuch

Wish you a good surgery with a good healing, Katarty! And have a strong courage. In our age it isnt important, whether we will have some bowles dangling or not. The effort is important and your life after. And im shure, that the removal of our eggs is more healthy than to take some chemicals over years! I wonder only, that your surgery date is so late??

And are you married? My wife doesnt it matter too, when i loosed my old balls, which had done their good work for us two over a long life...

addicted2cycling profile image
addicted2cycling in reply to hanseunuch

hanseunuch wrote --- "I was castrated o good year ago....................I cant explain it, but i find to be a castrate is the highest male level. And i can stear my sexdrive by myself with testo-gel! This is better yet - i mean - than the time, when i was chased from my eggs. Now i am the boss..."

Welcome to the club 👍👍 by this 71.5yo Senior Unique Eunuch who lost 10 pounds in a matter of minutes when "The Boys" were removed almost 7 years ago. 😀

treedown profile image
treedown in reply to addicted2cycling

10 pounds, those were some big balls!

addicted2cycling profile image
addicted2cycling in reply to treedown

All in a 5 pound sac. Made the bike riding uncomfortable for sure 😂

treedown profile image
treedown in reply to addicted2cycling

I am starting to fill out my shorts better with being off ADT (for now) and not dealing with a retractable penis anymore which is actually more comfortable. It gave new meaning to "like a freightened turtle"

addicted2cycling profile image
addicted2cycling in reply to treedown

The COLD will always have its revenge.

CAMPSOUPS profile image
CAMPSOUPS in reply to addicted2cycling

Nice come back ha.

Not too long before this all started I was bragging about in old age the balls and all drooping/hanging so much that I had to kind of aim/swing them into position over the toilet opening as I began sitting on the toilet.

But alas no longer is an issue. Instead no longer is very light gentle coaxing with the index finger all that is needed to aim into the bowl while sitting.

Must now pull/stretch it out and hold onto what little is there to make sure it doesn't retract resulting in peeing out between the toilet seat and toilet rim ha.

addicted2cycling profile image
addicted2cycling in reply to CAMPSOUPS

Good old dependable Duct Tape around the front 😜 of the seat/bowl helps keep pee from shooting out. 😂

katartizo61 profile image
katartizo61 in reply to hanseunuch

I was diagnosed may 28th and began treatment. My Mo is not promoting this and he is Indian where that is the #1 treatment. my Orologist is in favor. Scheduled apr 01

katartizo61 profile image
katartizo61 in reply to hanseunuch

Not married have a long time 15+ years lady unit LOL. She seems good with this and has supported me the entire way. A agree at our age it's a good thing

hanseunuch profile image
hanseunuch

Ouh yeah, Addict! You feel the same as like me after your castration!!?? I never had thought this. I had expected with the castration: Oh,oh,oh, when a man is castrated - this will be his end!! His most important bodyparts ar gone!! What will say the other peaple, what will say your wife, when you will come with a empty sac???? And than? It was sooo an easy feeling, when i went from hospital home. Not even the pus-troubble over four weeks could get me down. When this was over, i nearby have not the courage to say, that i am was happy in my eunuch-state!!!! Until today!!! How a grown man can be happy, when his bag is scraped out and empty???? I believe, nobody can explain this....

addicted2cycling profile image
addicted2cycling in reply to hanseunuch

Many men think with the head between their legs instead of the head between their shoulders. More difficult for them coping with being nutless.

hanseunuch profile image
hanseunuch in reply to addicted2cycling

Yeah, Addi, your words with the 10 pounds are trew really. This is a right point. Our bags content was a great fat weight, which has steered our whole life! Its over now, while im a steer, haha!!!

And a plus-point is the empty sac for cycling in each case - thats trew too.

CAMPSOUPS profile image
CAMPSOUPS in reply to hanseunuch

Funny. I wonder how many people didn't understand the "steer" joke.

addicted2cycling profile image
addicted2cycling in reply to CAMPSOUPS

Or Rocky Mountain Oysters. The trailer hitch hanging bag behind my car is indeed functioning AS INTENDED.

hanseunuch profile image
hanseunuch in reply to addicted2cycling

Such a funny bag isnt hanging behind my car, because the docs only took out my eggs and my bag is dangling yet as a little floppy from me. The bigger egg went to the Pathology - Goodbye forever - and the other smaller one i got with me at home, because i wanted not be ungratefully and let it end in the refuse! And so my good old shepherdbitch got it as a goody and i believe, that she has known during eating it thoughfully, that this was an important part of her master. And i find it better ending than its bigger brother, dissected and in refuse....

katartizo61 profile image
katartizo61 in reply to addicted2cycling

Agree definitely a priority change for the better

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