Orchiectomy Nov 2 , its not that bad - Advanced Prostate...

Advanced Prostate Cancer

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Orchiectomy Nov 2 , its not that bad

CSHobie profile image
52 Replies

After 7 months on monthly Eligard (same as Lupron), I got the snip yesterday. ADT with Zytiga and Prednisone. Longer duration Luprolide is even worse than the 1 month shot, so also no thanks.

I decided shots for the rest of my life, no thanks. If Lupron was indeed the first medication in the world with zero side effects, I would stay with it, but its not, so I don't even need to analyze it excessively, I will take the other side of the trade.

So far the first 24 hours, are really not bad. I had the simple Bilateral, with scrotum reduction. So I probably have a bigger incision then most guys. My Urologist got to the tubes high up, he said, so I should have less pain from the tubes.

As I woke up from anesthesia I had the best two hours of the last six months. Although the incision site was painful to the point of pushing my BP up to 195, I felt great, no back pain for two fabulous hours.

So I guess it is a matter of perspective. If you have absolutely zero pain, it will be significant discomfort. For me, my ribs and back are still way more uncomfortable, Orchiectomy needs not to be feared, its ok . We can do it, and we are still men, same as before.

As the week continues, I may of course feel further discomfort, but as long as I don't get an infection, I think I will be ok. At 52 yo, I am not done yet, not going down without a fight.

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CSHobie profile image
CSHobie
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52 Replies
Shooter1 profile image
Shooter1

Good step in your fight. I am 40 months off Lupron for life and glad of it.

in reply toShooter1

We agree !👍😷

addicted2cycling profile image
addicted2cycling

My bi-lateral Orchie was April 2015 and never really experienced pains only some discomfort. No need to even pop an acetaminophen the following day. Got in 108 mile comfortable bicycle ride Saturday night/Sunday AM under the Full Blue/Hunter's Halloween Moon. Was hoping for 200 miles but due to a minor BUT PAINFUL bicycle crash on Thursday I just couldn't extend any further. My 70yo body doesn't bounce like it used too.

Good luck.

Currumpaw profile image
Currumpaw in reply toaddicted2cycling

Hey addicted2cycling!

Discomfort? I expect that you are like me. Shrug it off--right?

Eric Burdon?--"Pain more painful, the laughter much louder yeah--"

Currumpaw

addicted2cycling profile image
addicted2cycling in reply toCurrumpaw

Couldn't "shrug off" the ouch from the stupid stitches sticking me.

CSHobie wrote >>> " ...We can do it, and we are still men, same as before... "

........ I'M NOT THE SAME AS BEFORE but rather a *Unique Eunuch* since there's no one else like me. ;0) Did an AWESOME 36 mile bicycle ride this morning feeling great thanks to the cooler weather.

Good luck to you and greatjohn

in reply toaddicted2cycling

True! No one like you . You’re an amazing man . Although I too am a Unich .

greatjohn profile image
greatjohn

I'm on day 7 after my castration...and after a little discomfort the first night...It's been really easy. NO pain...but I have to keep reminding myself that I am supposed to be taking it easy. Was doing a big of gardening today and this was my first day back walking our dog around the golf course Morning and later Afternoon. I feel great! Glad you're doing so well.

in reply togreatjohn

Take it easy for several weeks please ? ✌️

Currumpaw profile image
Currumpaw

Hey greatjohn!

Glad you are doing well!

Currumpaw

User2008 profile image
User2008

I want to discuss the option of an orchie with my hubs, but I really hesitate to do it. I fear the Lupron side effects and I know that he will be so unhappy living with them. I really feel that if the orchie eliminates the need for the shots, he will be happier in the long run. I just don't know how to broach the subject. I'm glad you are happy with your decision.

CSHobie profile image
CSHobie in reply toUser2008

2008, It is a deeply personal decision, I would not push someone to do it against their will.

Orchie is really only for men who has an outlook of being on Lupron or whatever shots for life.

One thing that Urologists don't stress enough initially, is that once you have been on shots for several months, your testes are not really coming back to life when you go off the shots. It can take 3 months to even years to recover to an ok T level. I posted a link to a study on this comparing monthly vs 3 monthly shots. 3 month shots take longer.

My surgeon even said to me at the final consultation, if you ever need T back again, it is very easy to the Androgen gel, and rub it on your skin.

I think for a woman getting a mastectomy is far worse than a man getting Orchie. Nobody will ever see or notice, I don't have testes. Only my inner circle people will know.

Anyway, good luck with your decision.

User2008 profile image
User2008 in reply toCSHobie

Thanks for the frank answer, CSHobie. I would NEVER push hubs to do anything against his will... ever. I just think that urologists simply offer Lupron and other ADT as the "next step" when PSA starts to rise again and when radiation is no longer an option. My hubs is fairly young, at 64 - and has been dealing with PC since 2010 and has already had a recurrence (and subsequent radiation) - so I know that ADT is probably the next step.

All the best to you.

in reply toCSHobie

Like my uro said to me” who’s going to see it anyway”? Protecting the family jewels is no longer a thing ..

in reply toCSHobie

Orchie? Hahaha ... now I’m damed orka ,or orkra , not much difference anymore . 😂😂😂You’ll get in touch with your feminine side .. maybe start baking cookies and wearing a moo moo?. Cant fight em . 😂😂😂😂😳

CSHobie profile image
CSHobie

As an update at 2day 2. Still significant discomfort, and lower back pain. Ice packs on the back are helping.

Actual scrotum pain is not bad, as long as I keep my activities calm and slow. Sitting is a bit tricky, it increases the pressure in the area.

I have a lot of paperwork to do, getting my will in order etc. good time to do this now.

in reply toCSHobie

In one month you’ll be over it

londoncyclist48 profile image
londoncyclist48

I've only just begun Zoladex monthly injections. When I first read about the possibility of doing this via surgery, I was told "we don't do that in the West" (I'm in the UK). Is it a better option though? No side effects I take it?

CSHobie profile image
CSHobie in reply tolondoncyclist48

Much has been written about the effects of the injections. Some call them side effects, but really they are the intended effects of cutting off Testosterone production. Zero T for a man is pretty harsh to say the least. We know them already, to name a few: Muscle loss, bone density loss, Belly fat gain, Insulin resistance, Various Heart problems, mental issues depression.

In addition to the above, the injections have more side effects, and make several of the above issues worse. Unfortunately this comparison has not really been very well documented.

A few benefits of the Orchie, are convenience not needing injections for life, even lower T levels in some cases, constantly low T levels. We hope for less likelihood of Bone fractures, less mental breakdown, Less heart problems maybe.

Some guys may disagree, but it is not a clear run away victory in the pro and con lists, for Orchiectomy.

For me the deciding factor is, I will be on ADT for life, so if I can manage 3 years, and have less side effects, Orchiectomy was worth it for me.

If I die in 6 months, I would concede Orchiectomy was no benefit, could have stayed on injections.

lol, trick is we don't know how much time we have. I am planning and acting for a 3-5 year lifespan, so I did it. Time will tell if it was worth it.

in reply tolondoncyclist48

I’d bet the farm that in third world locals that orch is first line of defense . Due to cost only ???

londoncyclist48 profile image
londoncyclist48 in reply to

I don't know any detail on this but I was told by a prostate cancer nurse in the UK that surgical castration is done in poor countries because they have no money for the drugs. She told me that they don't do it in the UK because of the permanency. But what is the other option? Zoladex for life and the inconvenience? I think I'm gonna go on the 3 monthly version.

in reply tolondoncyclist48

Yes, I’m sure that it is due to the cost .. stage #4 APC has no cure either .. I was told shots for life .. opted out of that hell . It’s all a gas man .Good day brother .

CSHobie profile image
CSHobie in reply to

As Whimpy says, the word permanent is the thing. If you are staring down permanent (Lupron or whatever) injections for life, aka Permanently.

Surgery is the same thing, but without the added side effects of Whatever injections you choose.

London, if I may suggest, this is too much pressure to decide now. Get the monthly shot right away to knock the T down, get that bloodsucker PCa off its perch. Don't get the 3 monthly, the 1 month has good tolerance. it is less painful than the 3 month too. Take the monthly for a few months, think about it, just take time to adjust to this new world you are suddenly in. Then make a decision when you are ready, and get the 6 monthly shot if you want to, or get the surgery. It's you body, your fight. That is what I did, it took me 6 months to decide.

The reason for the monthly, is these wear off much faster than the 3 month. Yes, even months after you stop the injections you will still have the side effects/ effects. More months after stopping than the monthly.

treedown profile image
treedown in reply tolondoncyclist48

I have been on 3 month since day one. I haven't had the common SE's like fatigue, or hot sweats but if the 1 month would have saved my junk and my body hair I will wish I had gone that route.

Flatman profile image
Flatman in reply tolondoncyclist48

Hi mate, and welcome to the club that none of us wants to be in! I hope yer doing ok.

Here in the UK, NICE guideline 1.5.7 re Prostate Cancer (PCa”) - IF it has metastasised - states Orchiectomy should be offered as an alternative to LHRH agonist therapy:

nice.org.uk/guidance/ng131/...

So, an orchi is definitely an approved option for any UK bloke with mets, and I know some blokes do opt for it, although it’s pretty clear that the majority in “The West” overall don’t.

If your Zoladex is for non metastatic PCa, then firstly that’s got to be a better stage for you to be at, but secondly there’s nothing either way in the NICE guidance about orchi as a treatment option at that earlier stage of the disease.

I assume general western medical practice wound down the use of routine orchis as the go-to PCa treatment quite a long time ago. They must have concluded it wasn’t needed “yet” as diagnosis, staging, treatment and management techniques became more sophisticated (meaning that long term castration therapy might not be needed if the PCa might not advance), or “if ever”, thanks to the new drug therapies that were perceived by many as a less unpalatable option to an orchi. Plus, in the US, for some time there were also considerable financial incentives for medics to prescribe the chemical options as opposed to orchis. That almost certainly helped to push the orchi for PCa out of fashion in The West. But it is still done.

As to side effects (SEs), there’s plenty of material on the web to read; my basic personal assessment of most of it is that either surgical or effective chemical castration will almost certainly cause a whole set of the same SEs associated with the loss of the vast majority of your Testosterone. However, chemical castration seems quite likely to cause others, and potentially more risks, in addition. On the other hand, an orchi will also carry a surgical risk, although none of its variants seem to be regarded as complex / high risk surgery.

Cut through the history, bias, continuing lack of openness about any form of “castration” as the gold standard treatment for many cases of PCa (few people including medics seem to want to suggest, talk or think too openly about it) and it boils down to personal choice. If you’re metastatic and needing a lifetime “hormone therapy”, the medical options are either your balls off, versus keeping them along with the SEs from the drugs that stop them working. Neither will stop 100% of the body’s Testosterone production, but that’s another avenue.

And yes, having an orchi is irreversible, although some men are subsequently able to have Testosterone therapy, so for them those fundamental SEs can be countered, even if only on a part time or temporary basis. That’s an evolving story.

The better choice? It’s up to every bloke to decide for himself, I guess.

All the very best.

londoncyclist48 profile image
londoncyclist48 in reply toFlatman

Thanks. Much appreciated.

Tom

CSHobie profile image
CSHobie in reply toFlatman

Flatman, you hit the nail on the head.

A lot of the Dr recommended methods come via big pharma influence.

These shots cost $1600 CAD, every 3 months. Zytiga cost $4400 per month.

These guys are pushing treatments that make money.

But of course, for men, testicles are important, this is a very difficult decision and a personal one.

Flatman profile image
Flatman in reply toCSHobie

I didn’t realise the money machine was so powerful in Canada too, CSHobie. And I echo londoncyclist48’s salute; you are indeed a brave man. But you also talk a lot of sense.

All the very best!

j-o-h-n profile image
j-o-h-n

Ok! Now, whatcha gonna scratch when you wake up in the morning?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/04/2020 6:29 PM EST

in reply toj-o-h-n

No scratching no more worries either 😷

CSHobie profile image
CSHobie in reply to

I feel lighter, very trim in the privates, lol.

Underwear fit better, jeans fit well, no problems

CSHobie profile image
CSHobie

Hi all, Day 3

Wound is looking good, and pain from the surgery is much better. I think we can conclude that the problem with Orchiectomy is not the actual surgery, it is the mental decision.

Orchiectomy decision for me was relatively simple, I have much bigger fish to fry, as they say, lol.

Good luck to you all,

londoncyclist48 profile image
londoncyclist48

You are a very brave man. Respect.

CSHobie profile image
CSHobie

Thanks Wimpy

Just reading that you survived three years post where I am, although different details, gives me hope that I can also get three more years.

I fight the bone pain every day, but I want more time, not done yet.

On the operation side, I feel good.

Guys, don't worry about the operation itself, that is a minor blimp. Get your mind in the right place.

Shooter1 profile image
Shooter1 in reply toCSHobie

To heck with three years. 2 years ago had thumb rebuilt on 10 yr plan, last month it was surgery on left little finger. Maybe it was on 8 yr plan...we will see.

in reply toShooter1

Time ? What a concept?

in reply toCSHobie

I’m on bone nutrients per a Nat dr . Osteopenia set in on me quick . I can’t regain what I’m still losing . I hope that you will keep bone health strong .

Shooter1 profile image
Shooter1

Just got through another halloween but without 2 jellybeans in my bag. Grandson had a ball on his first time to trick or treat (he just turned 5).

in reply toShooter1

We delivered a couple bags to our little kids on the block .. they were all happy . Children are the hope for this world . ✌️🕊

CSHobie profile image
CSHobie

Whimpy, I have so much shit going on, 😂

Hitting the advanced PCa Iceberg, was a Titanic impact, now I am in the tiny lifeboat... Just trying to keep it afloat, enjoy life, but the ocean is a rough unforgiving place. 😂

in reply toCSHobie

THe mighty ocean rules the planet . We are just passengers afloat ,as you stated . You’re not alone .

I used to say that I felt like Humpty Dumpty after the great fall . At least you’re in the lifeboat ? Many were crushed upon impact. I liken us to being in the eye of the storm .. the captain says “ The beatings will continue ,until morale improves “ The best that we can hope for is to tread water until help appears .. I’m sorry to offer you unasked for advice, Live life with appreciation ..... Keep rolling .. stay in touch ..........Scott🌵

CSHobie profile image
CSHobie in reply to

Lol, yes the beating is non stop. I am flying tonight to go visit my family in South Africa. That is what it's about now. Just hug your people, your kids etc. Today is someday. Don't wait.

in reply toCSHobie

Love each other with every sun rise .. it’s going to be fun. Enjoy that beloved family .. these are the times that make life worth living . Love baby! Safe travels ! ✈️

Loves2golf profile image
Loves2golf

Do they put in implants so everything looks normal?

Shooter1 profile image
Shooter1 in reply toLoves2golf

You can, but I opted out on falsies. If it bothers others to look at me, it may lead them to earlier testing---a good thing.

greatjohn profile image
greatjohn in reply toShooter1

I asked and opted for no prosthetics because the surgeon said there is more chance of complications with them... without then virtually no chance. My urologist also said that she found everyone ( almost ) that got them were unhappy .

CSHobie profile image
CSHobie

I am one of the weird ones, I had a srotal reduction. No loose hanging empty bag here, 😂 😂

I like the look and feel, something new to enjoy

in reply toCSHobie

I’ve had no issues , no t however kicks the shit out of me ..

greatjohn profile image
greatjohn in reply to

That is a given. I’m still surprised how motivated I am and still with a decent energy level. Strength after almost 5 years of Lupron and now castration is much lower than it was but still pretty good. Thankful to be thankful.

in reply togreatjohn

Hang in there baby............. we trudge on !🙏

Snip snip Hurray ! Good for you . Lighter , sleeker ,better on a bike ,no worries crossing a barbed wire fence anymore .. I felt it was a step in extending my life some? I also had some depression for a couple months afterwards . Hopefully you won’t get that. Having no t has its own set of deteriorating factors .. I hope to some day to get back on some t ..? For now it’s just a dream.. i did the orch 9-1-17 .. dropped the lupron shots . Good luck .. By spring you’ll be sayin ‘ what nuts”? No looking back . 🤙🏽😎

CSHobie profile image
CSHobie

Thanks Whimpy, I feel ok. No regrets. I had the depression already due to the Luprolide shots, and in fact it felt to me like the shots were affecting my brain badly, with brain fog. Now about 7 weeks after my last shot it feels like the fog is lifting a bit.

My penis has stopped shrinking for sure. While on the shots penis felt really dead and limp. Now it is fuller, looks and feels way better.

lol, Not exactly medical facts, but this how I am experiencing it.

Now 15 post Orchiectomy, the wound is good, no pain or discomfort, I just want to take my pocket knife and remove the sutures, if only my back could bend more so I could see properly, lol

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