Removing your testicles : So removing... - Advanced Prostate...

Advanced Prostate Cancer
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Removing your testicles

Doug47
Doug47

So removing your testicles may take you off the meds but, is that a good thing????

The Cancer cells just start figuring out how to feed on other shit right???

I feel so stupid with all of this. What does BAT mean?

I’m going to change my OC to someone else, I don’t feel I’m doing all that I should.

In 3 months my PSA WENT FROM 50 to .223.

My prostate was 58mm x 47 and is now 45mm x 37.

My lymph’s were 15mm to 11mm and now they are 10 x 7mm.

Good that my levels are down but, I should go through radiation to I think?

I’m so confused!! SHOULD I REMOVE MY TESTICLES??????

61 Replies
oldestnewest

You should only have an orchiectomy if you have no plans for a Lupron vacation. BAT - Bipolar Androgen Therapy (alternating androgen depletion and androgen supplementation) is an experimental protocol in some clinical trials. It can be done with or without an orchiectomy.

Have you considered genetic testing? I believe it could provide you with a wealth of information, and a possible road map to targeted therapies specific to you. I had the Color genetic test at the suggestion of my MO. I now know that I am BRCA2 positive, and that PARP inhibitors could possibly help me in my future treatment plan if/when I become castrate resistant. Right now Zytiga, prednisone, Eligard and Xgeva are working 4 months in.

Done that, no BRCA2

could you please send me what you have, on genetic testing? jpom222 at yah.

Much appreciated.

I had my genetic test through color.com , at the recommendation of a MO from Presbyterian. Very easy. Just spit in a tube and mail it to the lab. Takes several weeks to get results, which is given to you and discussed with a professional genetic counselor.

Doug47
Doug47
in reply to RICH22

My Genetic test through “Color” was very vague. Basically it stated that I don’t have the bad gene and it shows everything that they tested for.

If you have Mets, then you usually will be on Lupron the rest of your life....Lupron is expensive and it does not work 100%..An orchiectomy which before Lupron was standard treatment, is inexpensive, costs about the same as one Lupron shot and it's more effective than Lupron at achieving the lowest possible "T" count...Fact of the matter is, after you have been on Lupron for around 3 years, the effect becomes permanent and even if you stop taking it your testosterone level will not recover or if it recovers, it will only recover to a very low level..

Some think the drug Lupron has it's own side-effect load and these can be avoided by opting for the orchiectomy.. But the side-effects of castration are so profound that they mask any minor side-effects the Lupron itself might have..

Doug47
Doug47
in reply to Fairwind

That’s the response I was looking for, thank you. Tough decision

Fairwind
Fairwind
in reply to Doug47

Hey, for a few bucks more, the surgeon can insert a pair of "replacement" testicles that will be the envy of the neighborhood !

Doug47
Doug47
in reply to Fairwind

I’m thinking brass!!!!!!!

j-o-h-n
j-o-h-n
in reply to Fairwind

How about blue?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/07/2018 2:51 PM EST

"A day in infamy"

Hirsch
Hirsch
in reply to j-o-h-n

So many of us have forgotten this infamous day. 😳

my luprfon/provenge/zytiga is free for me its not costly

Hunt4Fun
Hunt4Fun
in reply to Fairwind

I agree. I had it done 2yrs ago after being on Lupron for 8 yrs and began experiencing a rising PSA and concern of cost and side effects. After surgical castration PSA went .02 and has stayed there. Only negatives was/is additional weight gain challenge, penis shrinking to a stub and increased breast size & tenderness. I believe from what been told by 2 urology PC specialists and personal research some of the potential serious long term effects of Lupron are reduced or completely negated. One area that I found vastly improved was my focus. After couple years on Lupron I experienced frequent brain fog and had real trouble focusing. That all cleared up in less than a year.

I have no regrets at all.

From beginning I was incurable T3B, seminal invasion and biochemical failure after RPC & 36 rounds of radiation. 2 different doctors never even presented surgical castration as option to Lupron or ADT. I moved and changed Doctors and healthcare org. and I started the discussion with him.

6 month Lupron shot was billed to insurance was almost 19K. INSANE! Look at costs in other countries.

I believe in many healthcare organizations it is all about the money and not about quality, effectiveness or efficiency.

I am so hugely disappointed, disgusted and embarrassed with our system of healthcare and with the politicians and political system that supports it.

Whimpy-p
Whimpy-p
in reply to Hunt4Fun

I’m with ya 100%!

Hidden
Hidden
in reply to Fairwind

"Fact of the matter is, after you have been on Lupron for around 3 years, the effect becomes permanent and even if you stop taking it your testosterone level will not recover or if it recovers, it will only recover to a very low level.."

Is this your opinion, or there's scientific evidence out there to collect? Interested with this situation, because, I'm in month-3 of ADT3 treatments (Eligard 6 months dose, daily-Casodex, Zytiga/Prednisone).

Going to be "proactive" with my treatments, because doctors don't explain anything well. In 2013, PSA 8, Gleason Score 6, my urologist recommended Radical Prostatectomy (RP), rejected that for Active Surveillance. Then in September 2018, my urine stream was weak, with burning sensation. So, PCa Dx, PSA 1000+, Significant pelvis metastasis and spine.

PSA 2.1 after two months of ADT3, no symptoms nor pain. But, I'm not going to wait blindly for castration resistance, this is the current standard of treatment, no way!!!

Doug47
Doug47
in reply to Hidden

I’m just shooting at the hip with thoughts

"But the side-effects of castration are so profound that they mask any minor side-effects the Lupron itself might have"

The case for chemical ver surgical castration (i.e., a drug like Lupron or Zoladex vs.an orchiectomy) is reviewed in the ADT book. The most recent paper comparing the tow is reviewed in a blog entry at LIFEonADT.com.

It is not obvious that one pathway gives better cancer control than the other. While it is often presumed that surgical removal is more distressful for patients, do not know of any published data showing that. If someone has a reference for that, could they please sent it to me. They do however have some other side effect differences.

Doug47
Doug47
in reply to Wassersug

Yeah that would be to easy of an alternative. Side affects and quality of life. It’s a damned if you and damned if you don’t. Sad we don’t know anything more than we do.

u go ahead and read about your balls its not the place where your hormones are mfg. so all u are doing is still making sperm and all u've done is made u look like a fixed dog. so save them. remember u have the cancer there is at this time no cure. at some point in life maybe like HIV could be a cure but i would say u will die of it if not something else

charlie

pretty sure most of your testosterone is produced in the testicles. "The hypothalamus and pituitary gland control how much testosterone the testes produce and secrete. The hypothalamus sends a signal to the pituitary gland to release gonadotrophic substances (follicle stimulating hormone and luteinizing hormone). Luteinizing hormone (LH) stimulates testosterone production." -- no testes, no testosterone.

Whimpy-p
Whimpy-p
in reply to RICH22

That’s a fact jack...

Testicles are primary producer of testosterone. PC feeds off of testosterone. Sperm is manufactured in testicles. Removing testicles will greatly reduce testosterone. In my case it did better job than Lupron. I believe adrenal glands can or do produce small amounts of T. If your doctor has told you different then I would question the competence of that doctor as believe that vast majority of the urology science word would disagree.

I can not produce sperm and a container ship of Viagra couldn't get me an erection since RPC & radiation.

Me personally, I would rather look like a fixed dog and reasonable sacrifice some quality of life to keep this horrific disease from prolifically invading my bones for as long possible. I believe in science and remain hopeful for additional treatment to prolong life and/or cure...maybe even in my lifetime

Each person makes their own choices with this disease and those choices should be made with objective research based on factual information.

Respectfully, I adamantly disagree with you.

I am different from most. Kill as many of the little bastards as you can with early and aggressive chemotherapy. Dutch your balls as a last option.

Look whether you take Lupron/Eligard or have an orchiectomy, all you are doing is suppressing testosterone and starving the mutated cancer cells. It’s a delaying tactic that works very well for some and not do good for others. Once metastatic disease is present the colonies of cells multiple and continue to grow at a suppressed rate, although slowly, they grow.

Radiation can kill, but once systemic, the cells travel through the lymphatic and vascular system looking to colonize.

A solid talk with your Medical Oncologist is advised. Ask him if he were in your shoes with this disease, how would he proceed? When I asked that question to my two Radiation Oncologist in 2004, the response was to find the best damn Medical Oncologist who specialized only on Prostate Cancer; not a generalist who treats other cancers such at lung, breast, etc. They further told me that I would find this person in academia and research as they are at the top of their game teaching new Medical Oncologists. Good luck and may you have many undetectables and a long life.

Gourd Dancer

RICH22
RICH22
in reply to gourd_dancer

i started casodex 6 months ago, PSA went from 15 to <0.1 almost immediately. but my T = 400+ -- and my ED seems to be disappearing. T is great stuff, not just PCa food. it's essential for body/mind functioning, so while 400 looks like a lot, it's still at the low end of healthy. i'm betting immunotherapy and genetic testing will bring us closer to total cures and eliminate the barbaric crap i've seen guys go thru. the poor bastards whose biopsies reveal GL 3+3, with 1 or 2 tiny lesions, then go RP and 39 RT sessions..., get botched treatments, colostomy bags and zero sex lives because some idiot dr. scares the bejeezuz outta them.... pitiful.

Sorry you’re going thru this Doug. I for one choose lupron. Even if it’s for life. To me (and everyone is different) the psychological affect of the other is to brutal for me to take. Is that weird guys? I don’t know. But I can’t help how I feel

Schwah

Break60
Break60
in reply to Schwah

I agree re: psychological impact . But my balls are useless now and I expect never will be useful again !😪

RICH22
RICH22
in reply to Break60

still fun adult toys to play with, right? look on the bright side, amigo.

carlo8686
carlo8686
in reply to Schwah

My dr asked me if I wanted to live in our first meeting. He did that as I was asking if I needed to go through the lupron/ Zytiga then radiation process. I would cut ,burn or swallow whatever he says and whenever he says. Life is all we have and if it delays the end I’m in.

redbank
redbank
in reply to Schwah

I'm on Lupron for life and I gotta tell ya it might be useless down below but I still like knowing they are there if I want to grab em!!. I thought about it but decided it wasn't for me .

Break60
Break60
in reply to redbank

Yea I have these dreams where I’m with hot chicks and have large wood then I wake up and find the same f...ing little turtle with his head in the shell!

RICH22
RICH22
in reply to Break60

i would venture a guess that every guy with ED has the same *&$^# dream!! the worst part is waking up BEFORE you reach under the covers to check...

I once saw a Far Side cartoon with a guy standing in front of two doors, the devil with a pitchfork off to the side. One door was labeled “damned if you do.” The other was labeled “damned if you don’t .”

The point is, once you are metastatic Stage 4, the difference between physical and chemical castration comes down to personal choice. From what I have read, they are both equally effective in temporarily halting the production of androgens. They both have pros and cons. But androgens are also produced by the adrenal gland and, at some point, by the tumor itself. Also, at Stage 4 you most certainly already have microscopic circulating tumor cells that won’t necessarily be killed by either means of blocking androgen production. Chemo will help with that.

What we Stage 4 metastatic guys are essentially doing is buying time for the scientists and researchers to come up with newer and better drugs and treatment protocols that may give us a cure for this killer, or at least make it a chronic, manageble disease.

Best wishes to you, Doug. We have a lot of tough decisions to make, and the choices aren’t always clear, and sometimes we just have to pick a door.

Off to the golf course 🏌️⛳️ with thanks 🙏 to God for giving me another day. 😎

Mark

monte1111
monte1111
in reply to Litlerny

Stumbled across your birm reply. Excellent penmanship. I'm guessing if you pick the right door you might get a supply of birm. Maybe Gary Larson is behind the other door. Really need to dig up my old far side collection. Great stuff.

Doug47
Doug47
in reply to Litlerny

Thank you very much for that

Doug47, testosterone allows the PCa cells to subdivide (make 2 cells). Without T the cancer cells can not subdivide either. There are other places in the body that produce androgens other than the testes. One place are the adrenal glands on top of each kidney. They produce dihydro-testosterone, which forms 2 molecules of T and is more powerful than T. Lupron stops androgen production throughout the body. Removing the testes is a partial solution.

Each prostate cell has a "spot" on it's cell membrane called the androgen receptor (AR). When androgens (like T) are near or touching the AR cell division is initiated. I was on Lupron (Eligard the generic) for 6 1/2 years and so far I am cancer free. I also had 72 radiations over 11 years. Each of us have different cancers in different parts of the prostate, and I wish you well in your journey. Always remember to just keep truckin'.

I believe that the adrenals produce DHEA & androstenedione, which are precursors for T & DHT.

-Patrick

Thank you, that makes more sense.

Doug47
Doug47
in reply to JimVanHorn

Jim, thank you for explaining that for me and breaking it down. That helps tremendously right now!

It's certainly less expensive and has fewer side effects. More convenient at well. You will still have hot flashes. Your pituitary gland produces a small amount of testosterone and eventually your cancer cells will produce testosterone in any mode of deprivation.

Sorry Doug,

I intended to state "andrenal glands".

WSOPeddie
WSOPeddie
in reply to Jasper2

Just a note to all -- your post can be edited after you've hit the reply button. See that 'More v' field? Click on that to edit / correct your post.

Hi Doug,

Do not get upset about this. I have had PCa for 14 years and the issue of testicular removal has not been an issue.

With androgen meds around why do that? You can always stop using a med and let nature take its course.Then return to it if necessary.

Meanwhile use nutrients to kill the PCa. There is no long term benefit from testicular removal.Keep your DHT in control and watch your estrogen levels..Estradiol in particular.

Im on the Ntpc group if you want to post there too.

Dominick

Doug47
Doug47
in reply to elvismlv123

Thank you

RICH22
RICH22
in reply to elvismlv123

HOLY TOLEDO! 14 yrs, using only ADT? what was your PSA and Gleasons when your were diagnosed?

elvismlv123
elvismlv123
in reply to RICH22

My PSA at dx was 4.7 and my GS was 3+4. I did the Leibowitz protocol or 3xADT...

13 months 3x50mgof casodex daily,5mg finasteride daily and a monthly shot of

Zoladex in the abdomen area. My PSA dropped to .005. But I did a form of the protocol 6 months prior eliminating two of the casodex pills.

BTW I had a second biopsy 3 months after the first and my GS changed to 4+5.

Prostasol made that change but no one except Dr Gleason acknowledged this who looked at my slides after John Hopkins said it was a 4+5. As a matter of fact JH called me (Dr Oppenheimer?)and asked me if I was on Lupron. I said no but I was taking Prostasol. They didnt respond to that info. The Prostasol dropped my PSA in half in 3 months. So I was on some form of ADT for over 18 months.Naturally my T dropped into castrate range.

Well if you do, there are some pluses. You don't have anything to scratch when you get up in the morning, your briefs will feel more comfortable, you don't have to worry about getting kicked in the nuts and you can stop paying to insure your family jewels.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/07/2018 4:48 PM EST

"A day in infamy"

Doug47
Doug47
in reply to j-o-h-n

Lmao!!!!

RICH22
RICH22
in reply to j-o-h-n

buddy, you are off the deep end. seriously oughta try therapy - if that don't work, get into stand-up comedy. i'll come to your first show - if you bomb, it's back to the drawing board. PS do NOT quit yer day job.

j-o-h-n
j-o-h-n
in reply to RICH22

So Rich I used to be a stand up comic....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/10/2018 11:03 AM EST

j-o-h-n
j-o-h-n
in reply to RICH22

until they told me to sit down....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/10/2018 11:04 AM EST

I’ve only done RT and adt and I’m in a clear status for 3out of my 4 yrs fighting APC...Still have a prostate.. Orchiectomy ? Most men can’t fathom the thought...I did it 9-16 without regrets .. I was opting out of shots for life, don’t miss those. But ,No body suggested this to me .It was my own thinking but my Doctors allowed me to do it.. Whether one is chemically or surgically castrated the side effects are the same.. This is a choice that only you, can make for yourself. A more personal choice does not exist.. I once read in penthouse forum when I was a very young man a a story of a guy describing an orgy in Brazil and the main dude had no balls. He was going from sex act to another. The guy that witnessed it was blown away.. I never forgot that image.. I’m not saying that I’m that guy , but I do get nightly erections anyway without balls ..just saying... APC is an all out assault on our manhood.. I had pains and discomfort down there that now are only and afterthought.. My PC specialist asked me to wait for one year before an orchiectomy . They told me that if I wanted to that they could put fake balls in.. That was rediculous to me.. like my dr said” who’s going to see that anyway? My gorgeous wife says that I look no different .Follow your own path .. APC for me has been a battle with ego and self.. Ego and the family jewells ran hand in hand while I was driven by testasterone ..Now that “T” will kill me , Ego and balls are no more.. For me it was a positive affirmation of how much that I want to live.... You will do what is right for you... Good Luck..

Doug47
Doug47
in reply to Whimpy-p

God thank you for your story, I’m really baffled by all of this. It’s a lot to consider.

Whimpy-p
Whimpy-p
in reply to Doug47

Welcome to the club! We are all overwhelmed when in the sights of APC.. Whatever it takes to break the stranglehold from our throats..

Whimpy-p
Whimpy-p
in reply to Whimpy-p

Any one that has “all” the answers is full of BS.. From my experience living with APC is a crap shoot.. pray pray pray.. I never stop...

j-o-h-n
j-o-h-n
in reply to Whimpy-p

"The guy that witnessed it was blown away". Me thinks, poor choice of words...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/07/2018 11:24 PM EST

A day of infamy.

Whimpy-p
Whimpy-p
in reply to j-o-h-n

So sorry Tri-pod! I’m no poet..

Hidden
Hidden

You definitely found a topic we are all sensitive and we have all considered. My Onc put me on Taxatere and 30 day Eligard so that the chemo helps me get the numbers down and down hopefully for an extended time. Also to address the lymph nodes. I think that there are far too many new treatments coming to decide to remove your balls or mine. Just look at what we have today that was not around just a few years ago. Maybe get a second opinion from another oncologist?

Hello,

Difficult to make decisions on this whole isssue.

I asked my oncology surgeon about castration and he dismissed it as only for 'the homeless and drug addict guys'. I moved to a new oncologist and presented medical oncolgy literature on benefits of Estogne patches. He read then and agreed. MY PSA has dropped from 12 to now about 0.016 with Testosterone at <0.1. Side effects yes, breasts and sore but no cardiac or bone loss risks as with most ADT therapies.

From Medscape article below Estrogen confuses pituitay gland and so no testosterone is produced in gonads, adrenal or hypothalmus. To be proactive I get DHT and Akaline phosphate tested every 3 months. The DHT determines if PC is bypassing testosterone and Alkaline phosphate test indicates metastic cancer in bone or soft tissue. Planning to add test for Chromogranin A which can indicate prostrate ductal adenocarcinoma which does not always produce PSA as I had ductal adenocarcinoma in my biopsy following radical prostatectomy seems like a good idea.

Estrogen Action and Prostate Cancer

"In the early era of prostate cancer research, the role of estrogen was primarily seen as an indirect anti-androgen action mediated through feedback inhibition of hypothalamic luteinizing hormone (LHRH) and pituitary luteinizing hormone (LH) release, resulting in decreased testicular androgen synthesis and release. Consequently, administration of exogenous estrogens such as the nonmetabolized diethylstilbestrol (DES) was used to reduce circulating androgens to castrate levels in patients with advanced prostate cancer.[4] Moreover, this method of effective 'chemical castration' was noted to lower the incidence of bone mineral density loss, a known complication of other forms of androgen deprivation therapy that also reduce the level of circulating endogenous estrogen.[6,3] This highlights the fact that estrogens and estrogen analogs play important physiologic roles in normal, healthy adult males.[3] The ability of estrogens to treat or prevent prostate cancer is under continued investigation. It was recently demonstrated that DES may be able to directly affect prostate cancer cell division by inhibiting telemorase."

medscape.com/viewarticle/742

Everyone responds differently and no magic bullets out there ...yet. Estogen patches may work for you as an alternative to castration and maybe woth a trial especially as one ccan increase the patches and estogen daily/weekly as determined by PSA rresults.

Best of luck and just keepp asking tghe questions.

Peter

We have been visiting new med oncologists searching for a keeper.

The latest one asked why my husband had an orchiectomy.

One word explanation, desperation, and he seemed to understand. Doc may have been thinking well how will I make any money off this guy so he ordered an Axumin scan for him instead.

Hubby has 18 years since dx and was only on ADT for the last three years of 18 but quickly became castrate resistant. We hated scheduling our life around those injections.

After having the orchiectomy which starves the cancer of testosterone, the cancer with will find other sources of testosterone. The pineal gland produces some. When your PSA begins to rise then you go on ADT meds and/or radiation if the cancer is still contained within the prostate depending on how aggressive your Urologist or Oncologist feel is necessary.

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