I know that I know that I know (somet... - Advanced Prostate...

Advanced Prostate Cancer

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I know that I know that I know (sometimes)

greatjohn
greatjohn

....a bit of perspective along the journey. Going in on Monday for Orchiectomy. Earlier in my life this would have seemed unbelievable. Now it makes sense.

Life is a journey and for each of us....of epic proportions. The Camino de Santiago, Lourdes, Medjugorje....a daily walk around the block. Every step another in the great journey of life.

gJohn

P.S. my puppy Sparky says I can borrow his cone after my "procedure" We will now be really twins.

67 Replies
oldestnewest

Best of luck John!! Can’t speak from experience but mostly all I read from guys that have had the procedure, do not regret it!! The way that ADT hit me, and as my vacation will surely end at some point in the foreseeable future, I fear I will have to make this call as well!! It’s something you just can’t get out of your head!! As sick as it may sound, maybe sooner than latter is better so it doesn’t bounce around in the cranium for years!!

We will need pic’s of that cone thing!!

God bless

Jc

greatjohn
greatjohn in reply to Jimhoy

thanks & happy trails!

All the best GJ, you got this Bro 😉

My very best to you, take care

Haniff

greatjohn
greatjohn in reply to Haniff

Thanks...I’m feeling very positive about this step in the journey.

Hey, be careful when walking through doors, the cone will catch edge and knock you over. And keep your head above all items that could be swept aside, this happened to my dog all the time.

All the best...

greatjohn
greatjohn in reply to DarkEnergy

Thanks 😊 I’ll be diligent.

Best of luck, John, and I hope you have a speedy recovery. Please keep us posted.

Thanks and will do...

What we have to go thru...All the best have a Speedyx recovery!!!

Good luck I would have done the same a couple of years ago but my wife couldn't face the the thought so its on with the shots. Getting to be the best time if the year in your parts enjoy the cooling weather and lack of tourists.

greatjohn
greatjohn in reply to noirhole

New Yorkers are coming down in droves... to stay... buying up property. Houses are selling for more than asking the day they are listed. I think we will have to get used to the crowds year round... but, thank you Jesus, it’s finally not in the 90s every day.

Great choice, no more lupron and really quick recovery. Best of luck with continued treatments.

Doug

greatjohn
greatjohn in reply to Shooter1

Thanks for your encouragement Doug 🥰

Dang buddy ...good luck and I hope it helps you a lot. “ Hang “ in there brother ....

💪💪💪💪👍👍👍👍🌼🌻🌸🦋🌈

greatjohn
greatjohn in reply to Kaliber

Thanks

Good luck. This is just another one of these WTF moments. But let me know how it works out for you. I'm tired of the Lupron se so am considering this as well.

greatjohn
greatjohn in reply to Maleko808

Will report what it’s like “on the other side “....hoping my energy doesn’t get lessened. It IS supposed to be better for the heart than ADT.

All I would say was said above , but interested in your opinions after said and done. May be a decision I need to make as well. Here's to an uncomplicated procedure and a quick recovery.

greatjohn
greatjohn in reply to treedown

I will report honestly about the pluses and minuses over the coming months. I always hope my journey will help others on theirs.

treedown
treedown in reply to greatjohn

They do, and I feel the same way. We are all so different in how each treatment effects us but by each of us posting we learn the range of possibilities. At least that helps for me. Thanks for your postings they always make me smile if not laugh out loud.

greatjohn
greatjohn in reply to treedown

Laughing out loud is the best medicine 🥳

treedown
treedown in reply to greatjohn

For sure, I guess that makes you Dr. Great John.

siouxbee19
siouxbee19 in reply to greatjohn

You said it all right there! That, combined with your positive outlook, and last but definitely not least, your precious Sparky, why you've got this! Best to you always...🌻🕊️🙏❤️🐕

Best of luck, john

Hi John, in April ‘18, just over a year post stage 4 PCa prognosis and at the ripe old age of 44, I took the dramatic step of a bilateral orchiectomy as my testosterone remained high no matter what ADT drug I was on... it worked and whilst the emotional impact was far worse than the physical impact, I haven’t regretted it and although I miss “them”, I certainly don’t miss the injections. Good luck.

Cam

greatjohn
greatjohn in reply to Cam73

Thanks... I’m so ready to let go of them. Hope you are doing well for many years. At 44 I would not have been able to conceive this... at 63, somehow it seems “do-able .

All the best and huge hugs

gJohn

GJ. May all go well. My thoughts and prayers are with you. 🙏🙏🙏. Arlis

thanks Arlis!

Good luck GJ. And remember, that cone is to keep you from licking the sutures. Stay away from them my friend🤓

Why do dogs lick their nut sack? Because they can. Good luck John.

Good luck and thanks for all you do out here.

Good luck gj. Gotta think about it vs eligard for life. My feels sorry for our dog when he comes home with a cone and promptly takes it off. So far no harm has come from it.

Mike

I'm unclear on how this is supposed to work (and for the purposes of discussion I'll suppress my natural instinct to freak out just thinking about it, although many women have their own equivalent surgery and apparently just adapt without making a big deal of it - but then I see women as superior beings from another planet...).

Is the rationale for this that with ADT the cancer eventually overcomes the drugs anyway?

Can the cancer still find a way to do its thing despite the surgery as it does with ADT?

Does the surgery produce the same side effects and health impacts as the drugs?

Do the adrenal glands try compensate by increasing T production (since there is no longer any ADT drug suppressing the adrenal production), especially if you exercise (which normally would increase T)?

Your courage is just...beyond awesome. I can imagine what it took for you to reach this place of decision, but I can't imagine being brave enough myself to make that decision. I wish you the very best the universe has to offer.

greatjohn
greatjohn in reply to kapakahi

hmmm. **Disclaimer...this is MY next step based on ME and MY oncologist and MY urologist.

Firstly, neither of them brought up the idea...I brought it up to my oncologist and it went from there.

my understanding is that in most cases it doesn't have much more efficacy than ADT in controlling prostate cancer...however,

Advantages:

1. it's cost effective. Much less money in the long-term for my insurance (which has never given me a problem with the Lupron shots) but I'm a very cost conscious person.

2. It's time saving. Every three months on a regular blood work visit to the hospital I had to wait around for the Depot Shot of Lupron. Now, I'll be able to get my blood drawn and zip right out. (more time for quality time during the "good times" of this journey) Adds about an hour to hour and a half of extra "time" to my visit.

3. My oncologist (at my urging) told me that is is better to reduce side effects of Lupron on the Heart. I knew this from reading on here...but she confirmed it. This would seem the most "important" reason perhaps, if this is true. I am not warrantying this to be a fact for everyone.

4. I had a 2 to 3 week period just after the shot of my intense hot flashes/flushes and weakness and just general malaise (as well as being a bitch). I am hoping that this will be more constant and not have "ups" and "downs" so that my body just gets used to it.

5. I have read (on the internet) regarding some studies in India and abroad that show that some people's PSA does have a decent drop after the procedure. My oncologist says "it's possible". She didn't seem to sure of that study.

Disadvantages:

1....I'll never have children...h aha ha ha ha ha ha h a...I already have my Sparky (my puppy) who is the love of my life.

2. I won't have balls.

Disclaimer:

I spoke with MY urologist and asked him if HE was ME....what would he do...

he said "I think I would have the procedure"...then he shook his head and said...."no, I would definitely have the procedure" . I also asked him about risks of side effects with implants and he said the risk of side effects and complications is greater when you have implants...and I said...well that means..."no implants".

gJohn

SteveWife
SteveWife in reply to greatjohn

Best of everything life has to offer. It’s a great decision to get off Lupron in my humble, female opinion. Thank you for sharing your detailed decision. All I can say is that I have been told that I have balls. And I know for sure I wasn’t born with nuts.

GJ hoping all things work out very very well for you my friend. Can I ask what is the best possible result you can expect? This is what I would want for you and any others.

Big (5'5") Alan

greatjohn
greatjohn in reply to alangeorge

See the "LONG" reply above. Everyone is different...everyone has priorities and everyone is at a different mile marker in the journey. All the BEST!

gJohn

Best wishes. I wish I had the balls to do it.

oddly, LOL....that is ALL it takes.

Hi Greatjohn...I’m scheduling the same procedure but also getting an inflatable implant. Nothing works down there and the injections suck (both Lupron and Trimix). Like you and the rest of us, we’re living with APC, not dying with it.

For me, toughest part of this APC challenge is not all the surgeries, radiation, drugs and chemo....it’s facing the fact that I can’t vanquish it from my body and go on to live a normal life.

I’m going to encase my balls in steel and hang them off the trailer hitch of my truck...LOL

Kudos to you!!!

alangeorge
alangeorge in reply to CRK2

Not a lot of people have a truck and or the Balls to do that :) You made me laugh

Hi. I'm a newbie here. I'm 79 and was just diagnosed a few days ago. Haven't started treatment yet. Gleason is 8, 4-4. Last PSA was 11.6. Having bone scan Tuesday and pelvic MRI Thursday.

Hormone therapy sounded pretty benign until I got down in the weeds reading about it and reading posts here. Now I'm also considering just shedding the cajones.

All the best to you, John. I'll check back in later.

And thanks to you all.

dixiedad (and granddad)

greatjohn
greatjohn in reply to dixiedad

thanks & all the best to you...and good luck on step of your journey.

dixiedad
dixiedad in reply to greatjohn

Thanks

Best of luck GJ!

greatjohn
greatjohn in reply to Oct18

...thanks...and to you!

Don't even give it a second thought. They are just extra weight on the drag strip!

All best!

John, all the best to you. I will be doing the same thing on Nov 2.

Cancer forces us to make decisions that would have been totally unacceptable a few months or years ago.

But we do the best we can, with the information we have at the time. Moving forward

greatjohn
greatjohn in reply to CSHobie

amen, brother!

Had both mine taken out 3 years ago and to be honest I miss them. Not that I have any use at 75. Still had metastasis to the spine but it may have been there prior to the surgery. Breasts getting plump, having hot flashes, but PSA now down to <0.003, thx to zytiga/pred.

Good luck and speedy recovery to you.

Rest easy, John. The loss of your buddies hurts mentally more than anything else. You'll find a lot of motions are suddenly easier or more comfortable, like rolling over in bed.

I had a double orchiectomy in Feb '19, and I do not regret it, even though I have far less energy now.

Recover from the surgery is relatively easy and mostly pain-free. It certainly isn't utopia, but it's not a calamity either.

Good luck on Monday. I'll be cheering for you!

I wish you smooth sailing ahead. Most of my choices with this PC journey have been to seek calmer waters so I can enjoy the things that are more important in my life......like Sparky :) I hope this gives you more room in your life for more of those experiences. Best wishes.

** to listen to the video just click on the title on top of the video **

youtube.com/watch?v=7IjgZGh...

(and regards to your partner)

Good Luck, Good Health and Good Health.

j-o-h-n Saturday 10/24/2020 2:14 PM DST

Thanks for sharing in this big decision. I know I had a miserable time with the ADT. I have read that the NET result will be the same, but I doubt that. A permanent loss in the ability to produce testosterone (at least the significant portion) sounds better to me than the side effects of the ADT. I'm sure there are similarities, but there's no way the TWO are directly comparable, IMO.

I will consider it as an option for myself moving forward - I've had a BCR and will re-start ADT in the near future (awaiting scans / tests) before I start them again. I'm still fairly young at 68, but there will be a time when my natural loss in 'T' would equal my age 'capacity' to produce. I must be getting closer - maybe past 75 ???

Anyways, we'll see how I tolerate the next round of ADT - but I have already been warned -there is no going back - kinda like Last Chance Hotel !

Wishing you well on your journey .....

greatjohn
greatjohn in reply to RonnyBaby

and good luck on yours.....yes, the different ages...I'm 63 now...and I've been chatting with someone who's had this done at 44...make the decision different for us all.

Doing it at this late stage to get away from ADT side effects?

greatjohn
greatjohn in reply to Blueslover

I don’t believe it should make general side effects go away... but it is, according to my doctors, better for side effects that weaken/stress the heart.

Blueslover
Blueslover in reply to greatjohn

OK thanks. The new daily oral substitute for Lupron should be better for the heart also when it gets approved. I have extensive atherosclerosis and one stent. Have you got a cardiac problem?

greatjohn
greatjohn in reply to Blueslover

No... but I’ve been on Lupron 4 years and hoping to avoid any

Blueslover
Blueslover in reply to greatjohn

Gotcha.

Good luck

Hugh

I have followed your journey since being on this forum and it has certainly been a difficult one from every perspective. I don't know enough about the benefits of the procedure for APC, but you are knowledgeable and Itrust this is the right path for you.

You and your partner have had it very hard and I am sorry for that. It's not fair, all that you have both endured and continue to. I hope the procedure goes well and life gets better for both of you. I will be thinking about you.

greatjohn
greatjohn in reply to dmt1121

thanks so much for your (always) kind words. I'm going to try to create a new category... stage 5...LOL. Stage 4 seems "too final". I'm hoping it helps make each step on a hopefully long journey easier. Time will tell. P.S. and who knows? Stage 6? I'm not ready for the final curtain.

Life is Beautiful.

Lol. I approve!

Good luck with your surgery John. You are an inspiration to us all🏋️

John - no worries I donated my boys to the great blue yonder a year and a half ago (I was 57) in order to get approval for immuno-therapy. Much less painful than the vasectomy years ago. Very fair trade in my opinion as I'm metastatic and the immuno-therapy has shrunk the stuff all over me significantly and it's still under control. No need for implants, you'll get to enjoy the part of not squishing your balls when you cross your legs incorrectly. They got a pill for the side effect of minimal testosterone to keep you and your other half in a normal bedtime lifestyle.

alangeorge
alangeorge in reply to HerbieP

Hey HerbieP Hi!

Whats this pill? What does it do exactly? Is it pink and shaped like a penis? Whats a normal bedtime lifestyle?