Help for Husband: Yesterday we got good... - Advanced Prostate...

Advanced Prostate Cancer

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Help for Husband

JWPMP profile image

Yesterday we got good news about Jim's monthly PSA as it is continuing to trend down. As we were talking, he was expressing about how his libido is gone and "nothing works", and a couple other things. I said that's what the castration process does. We'd already talked about these side effects..

BIG mistake using that "castrate" word. He had completely freaked out, angry, making himself physically ill. I mean he's been told that his testosterone production has been stopped because that feeds the cancer. But for some reason that word set him off. I feel horrible. I feel like I set back his progress in fighting this.

As men, is there anything I can say to fix what I did?? I wish his doctors would have talked to him more. His attitude was always, don't tell me details just tell me what to do. Now he's mad at everyone.

75 Replies

Firstly, please Liberate yourself from this unreasonable guilt. A person is responsible for how that person chooses to feel and react. Anything can become an excuse to get angry when we are very stressed out. Just be nice to him and try not to bring this subject to him again because of his high sensitivity about this topic.

JWPMP profile image
JWPMP in reply to LearnAll

Thank you...the guilt is suffocating me right now.

Karmaji profile image
Karmaji in reply to JWPMP

The doctors are real sadistic bunch. They enjoy using the word Castration instead of low physical libido. My URO was laughing saying that we use this process for sex offenders. I feel that most of the docs in this profession have no libido anyhow, and they amuse themselves giving no consultation regarding this. All they do is attack the disease with all the toxicity, not caring at all for the patient and his mental state.So let us take our mental health and QOL in our own hands. No body can stop me from creating my own QOL as it is all mind game and I am master of my mind.

I told the URO I will activate the libido thru my own mental pathways. The trick is simple....

.I have not lost memory and my past happy life image is still alive.

.I start invoking all erotic relation we had together .... Activate mental images in that erotic framework.....and use all mental erotic fantasies....

All erotic fantasies are the key which are different for each of us. Without that, difficult to create new libido pathways.

.Do not forget to take at least 5 to 10 mg of tadalafil....a must for keeping blood circulation in sex organs....

It is work of couple together...relaxed, not feeling tired and enjoying hugging and feeling close..... I created new pathways thru mental imagery which bypasses the chemical castration pathway......I, though not often as it requires lot of imagining, made love with my wife and I even enjoyed my self though with semi erection and light ejaculation....

But these things you may not talk to these docs as they have no idea what I am talking of .

So tell your husband reset the mind, be happy, create your own QOL .....Things happen and mind takes it a new norm of living....

Look at life of Steve Hawkins....He lived fully even on erotic level which is part of being human......

Every moment of life is enjoyable.....a simple health mind set....

MSTI profile image
MSTI in reply to Karmaji

Yes, Karmaji. Great deal is in our heads and hands.

WSOPeddie profile image
WSOPeddie in reply to Karmaji

Yeah, my urologist never clued me in on taking low dose cialis to prevent atrophy while on 6 month ADT. He also didn't bother suggesting tamoxifen to prevent gynecomastia. He was treating the disease. He didn't give a rip about me, the man.

JWPMP profile image
JWPMP in reply to WSOPeddie

that's exactly how my husband feels

Poowater profile image
Poowater in reply to LearnAll

Great response.

The answer is do you want to live longer or get the libido back and die sooner. I knew that at 66 when this journey started that the sex drive would be gone but dying from this is not what I want. You have to appreciate more things in life than sex, there is your love for your spouse and your family that is more important. Tell that his family wants him around to enjoy life not in a box in the ground. ADT sucks but there is a lot of worse things in life , he is dealing with what he feels is taking away his manhood but manhood is more than the sex drive and performance. Have the doctor give him the talk and maybe he can find a group of other guys that are dealing with this, being intimate is more than sex. My sex drive was always in high gear but in a way I do not have to deal with that anymore and it is what it is and I cannot change it, it is about acceptance and frustration. You have to encourage him by telling him that you and the family still love him and the libido does not matter you want him alive and a part of your life, patience. I kinda of relate this to women having breast cancer and ovarian cancer, they feel indaquate as surgery changes the appearance or internal workings but they are the same inside so be patient and reassure him that you still love him and supportive as much as possible. Stay safe and good luck, God bless.

JWPMP profile image
JWPMP in reply to Muffin2019

He has been dealing okay with his loss of libido, hot flashes, all the crappy side effects, not liking it of course, but handling it...the word "castration ", after all these months of ADT and discussions etc, that word just sent him into this spiral last night and he's even angrier this morning. He feels like we were all "hiding" something from him...I don't get it..

guess I just have to live with the fact I messed up and pray he gets a handle on it. I will suggest he go talk to his GP who he really likes (when he starts speaking to me again)

I have in the past, mentioned finding a group but he said he doesn't want to sit around and whine with a bunch of guys.

I tell him I'm on this forum and how people feel just like he does. So he was asking for a while, "does anyone say this or that." or "wow, that's how I feel " But it all has to go through me. It feels like too much sometimes...

He was missing his "old self", but I didnt sense "inadequacy" until I used that C word, it's like the "inadequacy" switch turned on.

Really appreciate your input, I can't understand how a man feels so I need help.

Dastardly profile image
Dastardly in reply to JWPMP

Hi JWPMPYou have absolutely done nothing wrong. I think you are doing everything possible to help your husband, but it seems to me that he still hasn't come to terms with his cancer and your remark about castration just brought it all to a head.

For example, has he done any research at all into prostate cancer, its treatments and the side effects that come with them? You are the one who has joined this group and asking all the questions. You are not alone in this. A growing number of wives and partners seem to be joining cancer groups and acting for their husbands.

The big problem is that ADT (hormone therapy) takes away everything that makes a man a man. It takes away the sexual urge and the ability to perform. You lose muscle tone, start to get hot flushes, put on weight and grow boobs. Worst of all, after a period of time, the sexual organs shrink. Some men have worse symptoms than others, but it is all down to the lack of testosterone.

I wonder if your husband might benefit from some form of counselling to help him come to terms with what is happening to him? I'm not sure a GP would help that much. A specialised cancer nurse will know what he is going through and will know how best to help him.

I admire you and all the other wives and partners who have to deal with this dreadful condition. Without your love and support, us men would be in a really, really bad place.

JWPMP profile image
JWPMP in reply to Dastardly

The support on this forum is incredible. I feel so blessed to have found it. I really would be drowning.

Dastardly profile image
Dastardly in reply to JWPMP

There are some very knowledgeable people on this site who can be of great help to you. The rest of us do the best we can, but we are all here to help. You have to be strong for your husband as well as yourself. That is an awful burden to carry, so never be afraid to ask for help.Every good wish to you both

JWPMP profile image
JWPMP in reply to Dastardly

The help from this forum is unimaginable...I am so grateful

onemichael01 profile image
onemichael01 in reply to JWPMP

Find a cancer endocrinologist and see if they can help

WSOPeddie profile image
WSOPeddie in reply to JWPMP

Castration is certainly a 'loaded' word. It is something you wouldn't do to your worst enemy but this disease often requires it to survive. Was he surgically castrated or, like most of us, chemically castrated using ADT drugs?

JWPMP profile image
JWPMP in reply to WSOPeddie

ADT...Lupron & ZytigaHe had one testicle removed in 1992 for testicular cancer

Not sure it's something that you can "fix" because you really didn't do anything wrong. You simply stated the medical term. Unfortunately, being "castrated" is quite a loaded concept for some men, as it implies a loss of identity and/or status in terms of their own perceived manhood.

So quite independent of anything you say or of what words you use, it appears your husband has been avoiding this internal conflict, in part, by avoiding thinking about himself in terms of the word "castrate." It is much easier to just think of it as "doing what the doctor says" and taking his medicine. He is experiencing the side effects of the meds, and thinking about the words that describe his condition just adds insult to injury. (And again, it is not YOU that is insulting him... he is being insulted by reality, or more precisely, by HIS OWN REACTION to that reality.)

I have to let my wife know that while "trying to make things better" is a nice sentiment, it is only going to work if and when I ask for help, and invite her in to my inner world more as a friend than as a spouse (which carries for me an implicit assumption that my role is to support and protect HER in that role). In addition to a sense of loss, there is a certain amount of guilt felt by many men who lose libido and potency, so that makes it hard for the spouse to be the go-to person in resolving those feelings. So be patient and supportive... but not TOO supportive, lol?

Many men, like myself get, sad and depressed rather than angry. But really it is just a different expression of the same thing -- fear of loss (of both what was, and of what "should" have been). Neither version is particularly pleasant for spouses and children to have to deal with, and there is no switch that you can just flip, as a spouse, to give him peace. He alone has the switch, and while some men get it flipped for them by the Grace of God, some men flip it for themselves with the help of a friend, a therapist, a support group.

JWPMP profile image
JWPMP in reply to noahware

Wow! You just hit the center of the bullseye. Gosh I wish I'd read something like this months ago.Anyway, you are right. It cannot be fixed. in fact I think my marriage is over. He's getting angrier by the minute. I'm just so sick.

Anyway, I really appreciate your profound insight, although it's too late for me now.

Thanks so much

noahware profile image
noahware in reply to JWPMP

I wouldn't say it can't be fixed, just that you alone can't do the fixing... he needs to participate. It COULD be that you can help, but that's up to him.

I also wouldn't say your marriage is over, but it probably can't be the same as it once was. (For some of us, that's not a bad thing!) It has to evolve into something different, and that might be better or worse.

From your side of the equation, though, the best thing for both you and your marriage would be to try not to feel guilty for HIS reactions to his disease, his doctors, his treatments, etc. His anger belongs to him, and you will not help him or yourself by trying to own his anger or make yourself responsible.

I guess you have to try not to be angry about his anger, if that makes any sense. Or guilty. So talking this over with the help of a friend, a therapist, a support group would be just as good for YOU to do, too, as well as for him (if he eventually chooses to). Your increased ability to cope with new realities may trigger him in a positive way, or he might let it feed even more anger, but that is totally out of your control. (That Grace of God thing is no joke, by the way, and it often comes to people who seem beyond help or hope.)

So, as my wife like to say, "you do you, girlfriend." Hopefully, he follows your lead. You can't force him into a better attitude, but you can offer an example that attracts him or inspires him to work towards it!

JWPMP profile image
JWPMP in reply to noahware

Amazing...thank you

GabF profile image
GabF in reply to JWPMP

No, your marriage is not over for this only reason, he being so angry ! It will not last long. You can try shortening this period by not taking any initiative, letting him time to feel that he needs you, for instance, leaving him alone for a few hours or days.

Maybe I suggest some humour: he has not lost all his manhood, he still reacts as most men do, not speaking to friends, anger being the only emotion he is able to express.

At the moment, it is you the one who needs help.

JWPMP profile image
JWPMP in reply to GabF

Wow, thank you. Excellent points and I believe you are right

Excellent post, I hope he feels that inner peace and finds a way to mentally wrap his brain around the fact of chemical castration , his doctor can help alot and if he has close friends they can also assist.

JWPMP profile image
JWPMP in reply to Muffin2019

He will Not talk to his friends about it, period. I'm the only one he talks to period. I've been walking on eggshells for almost a year, weighing and measuring my words. I sure stepped in it last night. I've bought two books, one by Walsh and one by Schultz, he won't look at then. He won't ask the doctors questions. He does nothing electronically in life, no email, no texting, no banking. I've handled everything about his treatment with the insurance, doctors, MyChart etc etc.

He's done nothing but complain about UCSF. I should have let him stay local and even if his treatment was wrong. he could've been talking to doctors in person. Hes been on a couple of Zoom calls, but that's it. Some men from another forum have offered their number for him to call, nope. One word, one word turned our life into an unmanageable wreck. This has already been hard enough...

My mother has recurrent breast cancer and is having a double mastectomy tomorrow. I didn't need my husband in full blown meltdown the day before.

I just can't take much more of this whole mess...

treedown profile image
treedown in reply to JWPMP

I have many opinions that I will hold to myself. Your husband is very different than I am. My wife is more like your husband and doesn't ask questions or really want to talk about it. She feels like if she did she would just break down and not stop crying. At this point in my treatment hard decisions aren't necessary but when the time comes she will have to deal with it. I can give her this time to feel "normal". Unfortunately I don't have any ideas to offer for your situation only to say you have somehow ended up in a role that seems from your side to be very unfair to you. I am glad you can find support here so keep sharing. There's not much we can do to change your husband but this forum is equally for caregivers. Your doing a great job and this is not your fault, you should not feel bad about what happened last night. I know easier said than done but try hard to forgive yourself and move forward. This is your husbands burden as much or more so than yours. IMO fighting cancer is a mental challenge every bit as much as a physical one. Tolerating drugs and my "condition" with a positive attitude is very important to me and my life is still very much as it was before being dx. Of course as my disease progresses that may be more difficult but I will keep trying, one day at a time.

JWPMP profile image
JWPMP in reply to treedown

Thank you againIt helps getting perspective from men that are going through this. I have no way of knowing how he feels.

And I can't discuss with anyone who knows us. So this helps me so much getting feedback and practical suggestions.

Thank you

Muffin2019 profile image
Muffin2019 in reply to JWPMP

So sorry you have to go through this and sorry about your mom, he has shut the door of communication and is scared, you sound like a very caring wife that others on here would like to have. I was lucky to have a friend who is also my roommate of 22 years that went with me to chemo and helped get information as well as asked questions to the doctor, we talk all the time and knows what the future could be. You have to take care of yourself or you will be sicker, you might want to talk to the doctor to see if he can find some way of dealing with his fear and anxiety. He has to man up, face the truth and lean on somebody before he mentally breaks down and is in a very bad situation. Was he always like this when problems came up in the past ? When my father had his many years ago he flipped out and shut my mom out, they always seem to attack tgr ones closest to them.

JWPMP profile image
JWPMP in reply to Muffin2019

Yes he has in the past taken out his frustrations on me so to speak. Not intentionally I believe. His father was extremely abusive and his mom was one of the most malicious , manipulating, lying people I've ever met. They moved a trailer on our place 16 years ago when they lost their home. his mom passed away 6 years ago but his dad is still here and a constant trigger. However, this past year, Jim has really eased up on his anger issues and just focused on surviving and enjoying what he has here (we have horses and cattle, hobby so to speak). With all the ups and downs and unknowns of the last year his attitude has been so good for the most part. That is why I am so angry that I set us so far back with using that word...its astonishing how badly it turned things around and how concerned I am for his mental state right now. If I could only turn the clock back 20 hours...

Muffin2019 profile image
Muffin2019 in reply to JWPMP

Sounds like their is some genetic stuff going on also so avoid the castration if that is a trigger, I hope he will realize that it is no big deal of that word. Some have guys have cancer in the testicle and they have no choice of having them removed or dying. It is a psychological thing with men and I am sure he thinks like that but some like me do not care, we enjoy every minute. I now have a beer belly without the beer and man boops but I really could care less, joke about buying a training bra and the cup size. When I exit the shower I probably scare the cats, scare myself sometimes but still alive. I have seen guys that have a worse shape and at my age who cares, just do not look.

JWPMP profile image
JWPMP in reply to Muffin2019

love the humor!actually, he did have testicular cancer in 1992 and had one testicle removed.

He stays very active mostly and still looks like the same man to me, though I see subtle changes...makes no difference to me though it bothers him some.

so he slept all afternoon and is still sleeping. I'm going to the hospital in the morning for my mom's surgery so hopefully some rest and time to himself will ease the tension.

Was hoping someone had a magic conversation I could have, but apparently there's no such thing.

Thank you again

beachviews profile image
beachviews in reply to JWPMP

I'm so very sorry for all you have to endure. 🙏 Life is difficult for so many and we are all doing the best we can.

JWPMP profile image
JWPMP in reply to beachviews

I'm so sorry what you and your husband are going through, sounds like a long tough battle. Hope this new treatment turns things around. Thank you for taking time to share an encouraging thought...😔🙏

beachviews profile image
beachviews in reply to JWPMP

I've been thinking of you today. I hope everything is OK with your Mom. 🙏

JWPMP profile image
JWPMP in reply to beachviews

How kind and thoughtful!Her surgery was long but she did very well. She will be in the hospital a couple days then home. Such a relief to have this done...now the healing begins.

Thanks so much and hope your weekend is nice

RonnyBaby profile image
RonnyBaby in reply to JWPMP

His REFUSAL to consult and get 'educated' and learn about what can be done (there are some positive outcomes and helpful adjustments can be made) makes for a highly charged and negative environment to deal with reality and find the silver linings.

Self -destructive comes to mind. HE needs to change his outlook - otherwise he'll need to look in the mirror when the wheels fall off and he's all alone in his own 'universe'.

I've really noticed how the medical profession has tiptoed around the truth on this issue, calling it things like "hormone suppression", "hormone therapy" or "androgen deprivation therapy," etc. All in order to avoid the "C" word. Maybe people think that "castrate resistance" means you don't want to talk about it.

Don't beat yourself up for telling the truth. Yes, it is chemical castration, but we are making an informed decision about it in order to live. Unless you have surgery, it is reversable so it's not a permanent decision. I think that might help him to know this and that he can change his mind about it if he is really opposed to it. My guess is that he won't, but may be more willing to accept it. These things should be told to the patient upfront, doctors shouldn't be trying to sugar-coat things like this.

But we know it is still the best treatment for metastatic prostate cancer and has been since 1941. I feel we are lucky to have this option, only 3 types of cancer are sensitive to hormones.

I have a friend that refused to do it and I went to his funeral a couple years ago. What good is libido if you are dead?

Hang in there, we are all with you in this and we understand.

JWPMP profile image
JWPMP in reply to gregg57

Thank you so much for the kind words!I should have taken a cue from the medical profession and not used that word...

I've been living with fear and anxiety over his condition and keeping it to myself...and trying to soothe his fears as I can...my stomach hurts constantly, but we keep pushing through. Keep waiting to get through RT and to a stable PSA so I can take a breather. Not going to happen now...

Fortunately I have good friends to confide in and this wonderful forum.

Then I destroy it in one sentence...

Thank you again for the comforting words.

maley2711 profile image
maley2711 in reply to JWPMP

Leave a simple note for him to see. If you love him, tell him....and add "I'm sorry and apologize for what I said yesterday" I think you need to let him take charge of his health situation.....until he is actually incapable of doing so. You will help when he asks!!

Hi, I don't have much to add to the really caring, thoughtful posts from the others on HU.My proverbial two cents:

I got hit in 01/2015 and started ADT then chemos. In my mind, I was tracking the descent of my T (Testosterone), as I wanted the T at "castrate" level. That meant that the PCa (Prostate Cancer) would be deprived of what it needs to grow. Previously that level was < 50 and now it's < 20 T.

Although the data is showing the production of NEPC (Neuroendocrine Prostate Cancer) with long term ADT:

healthunlocked.com/advanced...

I took a hormone "holiday" and declined Lupron with the last on 03/2017 and then had to restart on 12/2018 when the PSA got to 10.8 T during that time got all the way to 1002 - right at the same time of the peak PSA. So with T restored for that period, I got some of my "mojo" back :-)

I don't know if that is a possibility with him, but something to ponder.

Btw, my T is around 10 and after a rechallenge with 6 more Taxotere sessions (had 15 in 2015) with the PSA @ 2.3 is at the lowest since 01/2018

Maybe something for your hubby to read: tehachapinews.com/lifestyle...

We all react differently to that dreaded "C" word news. I'm hopeful that he realizes that being at "castrate" level is the goal with PCa - don't wanna feed the d*mn terrorist cancer cells within our body. Longevity is the goal, whether we can have sex or not IMHO

Hugs from CA - I'm open for an email from him, you may message me for that.

Randy

JWPMP profile image
JWPMP in reply to dockam

Thank you Randy, so much

PLEASE be easier on yourself.

I just posted the following in another thread >>>

"...Met my wife of 48+ years in 1st Grade 1956 and went all through school years together with NO ATTRACTION at all. She never was "sexy nor was I" and we had our lives never dating or even kissing another until she stopped by the gas station I worked at in June 1972. Just talking while the gas filled the tank I accidently touched her hand and "SOMETHING INSIDE ME JUST HIT THE FAN." We went out a few times, FIRST FOR EACH, and one night I kissed her and less than a year later we were married.

My TREATMENT PROTOCOL BEGAN with CASTRATIION after which it was mind over no testosterone that mattered to still have satisfying sex. MAYBE BECAUSE I never experienced the plethora of sex so many have had in their lives that I was able to focus on the "here and now" and not on "what once was" allowed BOTH OF US to enjoy our NEW RELATIONSHIP IN LIFE.

BTW, no pills or needles..."

IMO, many men think with the head between their thighs and not the IMPORTANT ONE between their shoulders. One must straighten out one's thinking "up top" to gain control over the "new down below" and accept what IS and just cherish the memories of WHAT WAS.

Good luck.

Thank you for sharing your experience !!

I know I shouldn’t say anything, but I can’t help it. Your husband has put you in an impossible situation - he’s made you responsible for his health and now he’s blaming you for the decisions you had to make in an effort to help him. He is effectively blaming you for ‘castrating’ him. But NONE OF THIS IS YOUR FAULT - not your actions, your words, and certainly not his reaction.

Your husband clearly has serious anger management issues, with some paranoia thrown in (“ He feels like we were all "hiding" something from him” - seriously?). Your husband is refusing to learn anything about his condition and he refuses to get the help he needs to cope with it. The only thing you can do at this point is get help for yourself in dealing with this situation. A therapist or a supportive woman’s group might give you some clarity into your situation. In the meantime, please stop blaming yourself - you have done nothing wrong. I wish you the best.

JWPMP profile image
JWPMP in reply to Dett

Thank you for that "direct" response...I do need to fix what I can, me. I was hoping I could fix my words, but that is futile.My husband is an extremely kind good man. But he has certain "triggers" that bring out some irrational thinking. Me knowing that should have been more careful. Going forward I will.

I hope your husband's numbers are staying good and do so for a very long time. Sounds like you've been through a lot and are successfully holding down the fort. thank you again, I will take your words to heart. Guilt sucks!!

I have been on this forum for about 6 months, and I am still amazed at the depth of engagement and love for fellow man (and woman) it shows. I am lucky to have a supportive wife who constantly reminds me that she is not going anywhere due to lack of sex. She tells me that penetration is only a small part of sex, and using the wholeness of sex and loving in all its aspects and feelings gives her just as much. But I also know that despite this wonderful support, it is up to me to tackle my situation, and I have come to several conclusions.

1. We all have potential Cancer (yes - I use the word all the time - its called Kreft here in Norwegian) in our bodies as we get older - so a progression to cancer I look apon as a state of body not as a disease. Its like getting old - it is part of life and while you have to accept it, you can do many things to make that life more positive. In far forgotten times one would grin and bear it - and die young in much pain. We are lucky to have the ADT drugs - I live a normal active life full of optimism and joy. And I am constantly aware of potential actions which might delay the progression.

2. I can leave it all to the doctors - but hey - its my life and I want to be fully involved, fully informed, and inspired by all the other great people on this forum. These guys have done their research and they know what they are talking about.

3. Information, ideas, suggestions etc allow me to handle my life in the best way to give the highest chance possible that the Cancer will stay dormant. And this site is a godsend for that.

My feeling is that you are doing too much for your hubby. You need to look after yourself and realise that you have a life too - and that you cant cure his cancer - and only he can decide how the rest of his life will look. You are there for him when he needs you, and when he asks you, but you cannot live with guilt feelings for things you have done - you can only help him to manage his fear and his progression. Maybe you are doing too much ?? I feel you should give him a kick on the arse, and get him to join this forum himself (his name wont be shown). Just reading the other guys here will give masses of food for thought. It will certainly improve his quality of life and probably his prognosis if he himself does the footwork.

Be stong, eliminate your guilt, and live your life to the full - with an outstretched hand to your hubby. He will choose to take it, or leave it.

Some spot on comments!One common thought is "You are not at fault" while fully correct is not even close to simple.

Your husband seems to constantly act out and you feel the pain.

True that he needs to come to face the reality of chemical castration is keeping him alive but the result, for him, is difficult.

Ok, all that said please think of this, and share it with him:

Cancer is NOT a sentence; it's just a word!

I too had testicular Cancer, 40 years before pca in 2015. I too was on ADT (lupron) for 24 months. Yes lost interest but took meds to have some enjoyment with my wife.

After 18 months off lupron started that treatment again and recently started Nubeqa along with lupron.

I see a urologist that specializes in sexual disfunction, issues, for the softer word. He has helped.

I have no anger issues, listen to my doctor's, ask questions, and expect clear answers. I have always had a positive attitude.

Maybe you do too much but you love him and it needs to be done.

Talk with your own doctor about this situation. They can help.

Suggest to your husband that he needs to express his anger with his doctor's.

On a side note all but two of my many doctors are female, including my initial urologist that diagnosed my pca.

If you are of the mindset talk to others, religious others for some guidance. Pray if you can; it does help.

As to the word "castrate"? Well said alone it can make a man feel not manly or worthless.

Does he have hobbies or things he likes to do? If so encourage him to do those things.

And if you have hobbies/things you both like to do that is even better. But it is important to Take Care of Yourself!

You can help him but you cannot change him only guide and support him.

Share all these posts with him, might kick his butt for you?!?

Private message me for more if you like, I can have my wife offer her thoughts.

Best wishes and be strong.

zero guilt for you....what did your hubby think zero T meant? Did his Doc fail to be honest with him? Was he given the facts about expected survival with and without ADT?

JWPMP profile image
JWPMP in reply to maley2711

The Zoom calls are good, but I believe "in person" makes it easier to communicate fully. At the time his MO had our call (over an hour long) alls Jim's focus was (and still is) on survival and he didn't care about details. I think also, he was overwhelmed with info and didn't absorb everything. We have discussed often about the lack of T and side effects and how men on this forum have his same experience. I don't think he ever connected it with "castrate". I think he's "grieving" but it still hurts that I triggered it. All part of this new life of ours I suppose. Thank you

Might be your husband was in denial of his diagnosis and didn't hear the doctor explain the effects of ADT.Although some doctors don't fully explain in fear that the man won't do the treatment.

JWPMP profile image
JWPMP in reply to Teach73

He knew that they were stopping his T.He knew he would lose his libido, muscle tone, and hot flashes. He even made jokes about being one of the girls. Lately though he has said the cancer has taken everything that makes him, him. But has been so happy the his numbers are good.

As several people pointed out, I think sometimes I try to be "too helpful" instead of waiting for him to ask.

Paula,

Stop beating yourself up for something that you had absolutely no part of! You stated that Jim “does nothing electronically in life, no email or texting”; however, I find it difficult to believe that any man who has been dealing with PCa for a year had no idea of what negative consequences could be associated with this nasty disease? That in addition to waiting until he was 64 to get his first PSA was entirely his fault. I started getting yearly PSAs and digital exams at age 45, and ‘free’ ones (available at most US hospitals in September) when I was 50. I was diagnosed with PCa at 61. At that time I didn’t have a computer/Internet so I began going to the library to find out everything that I could about PCa.

Regarding his impotency, he just needs an attitude adjustment…he’s still alive, feeling good, and obviously has a very caring wife! My ‘worthless little thing’ hasn’t worked since my radical 17 years ago and currently can’t even control urination! That being said I still enjoy every day dining with friends and even joke about my impotence/incontinency.

Now I find more time to read, write, play with my cacti and tend to more important matters. My urologist told me many years ago when I complained about my lack of libido that, “I should look at the bright side; since you can’t do much anyway, not thinking about it is probably a good thing!”

I’m not discounting the physical and psychological effects of dealing with PCa, but Jim has to accept what it is, and thank God that he wasn’t DX in his 40s like so many of our comrades! Perhaps he needs to read some of Cleodman’s and Cleodwoman’s posts to help him deal with this.

My best to you both,

Ron

My hobby
JWPMP profile image
JWPMP in reply to ronronHU

Good post, thank you!I read Cleodman's post and was in tears!!!!! Incredible. As far as PSA test goes, neither of us had ever heard of it.

None of his doctors ever mentioned it.

And after diagnosis we found out many many people we know had it and never said a word to anyone. I have told all my friends, tell your husband's to get tested. They hadn't heard of it either! And if your doctor says not necessary, get a new doctor. We stumbled onto it. Jim went in for gout. I got him a new doctor because his prior one was not a good one and she had replaced his prior one that retired.

This new doctor ordered it on the first visit, and he himself had had it. We still wouldn't know to this day otherwise.

Anyway, thanks so much for your input

Chemical castrations a new normal for most of us out here 😡😡😡

Perhaps showing these responses from the male members will help. I’m a wife as well and this cancer crap is heartbreaking for not only the male, but the spouse and entire families. Best to you and your hubby. I hope he doesn’t stay mad at you long.

JWPMP profile image
JWPMP in reply to Madbeach

Thank you...He said this morning he feels like he has barb wire in his gut and can't quiet his insides...I stayed quiet. I can't fix it, I can't fix it. I'm at the hospital with my mom now, so hoping during the day today he'll quiet down some and I get my overdrive guilt back in the box.

Thank you for taking the time to respond also, this has been so eye opening for me.

Thank you

Madbeach profile image
Madbeach in reply to JWPMP

Hang on and hang in…..we don’t know u but we really do care.

JWPMP profile image
JWPMP in reply to Madbeach

Means so much, thank you 🥰

The actual situation is that the 'T' is at castrate LEVELS - which doesn't mean it is permanent.

The treatment path down the road will likely change change and it's possible he could 'reverse' that condition in due time.

At the end of the day, you are blameless and your husband is struggling with acceptance of his diseased state.

There is help available - even for 'caregivers'.

Hopefully a bit of time and proper guidance will set things back on a more positive path ....

JWPMP profile image
JWPMP in reply to RonnyBaby

what a good choice of wordsthank you

Give him a little space. I too have little to no libido and got a vacation from adt and had the time of my life sexually with my wife for two years until my psa started inching up again recently so back on to adt. Anyway he will realize that with such a caring and loving wife that being alive is much better than the alternative. Life ain’t perfect but it’s all we got. Hang in there my friend.

JWPMP profile image
JWPMP in reply to Mikes21

Thank you!

I told a couple of my relatives and friends that ADT causes "chemical" castration; that it is not a physical thing; that if the ADT fails, that I would probably wish that it had been surgical.

I had the same reaction as your husband. When my RO asked me how I was doing, I replied, "How the f*** do you think I'm doing? I got castrated. I got the same punishment we inflict on child molesters. The only difference is that I didn't commit a crime."

He was speechless. When he recovered from the shock of what I said, he explained that this is therapy, not punishment, to which I replied, "It doesn't matter what you call it. It's a highly toxic chemical that makes you feel like s***. I really don't want to be alive."

He insisted that I see the hospital's counsellor, which I did. With that and the help of antidepressants, and with ADT behind me, I feel much better.

My point is that your husband's anger is sad, but it's not unique. It's not even rare.

What the others have said here is completely true: you should feel no guilt. He's very lucky to have such a loving person at his side.

If the physical and emotional SEs are intolerable, you may want to look at high dose transdermal estradiol and a replacement for Lupron (or whatever GnRH drug he's on). This is certainly the direction I'm going if my PSA continues to rise.

Best of luck to you both.

JWPMP profile image
JWPMP in reply to Horse12888

Not that it's funny, but your response to the doctor made me lol. And sounds like something my husband feels!!He was handling it actually very well until I used the "C" word...that was the trigger.

He would say I hate the SE but I'll take over the alternative. Now he is in a state of darkness and I hope we can get him to get the help he needs as you did.

Thank you much!

Horse12888 wrote --- "I had the same reaction as your husband. When my RO asked me how I was doing, I replied, "How the f*** do you think I'm doing? I got castrated. I got the same punishment we inflict on child molesters. The only difference is that I didn't commit a crime..."

TOTALLY OPPOSITE REACTION FROM ME >>>

When the nurse asked how I was doing as I came out of my anesthesia fog following my bilateral Orchiectomy my reply ----

In the HIGHEST Soprano Voice I could Muster "very well thank you!!!" Her laughter could be heard outside the building.

My Orchiectomy resulted in the fastest 10 pounds of weight loss I ever had.

Testicle biopsy report included pathologist's side bar note >>> "I now confirm 10 pounds of balls can fit in a 5 pound sack"

One thing, guilt is a useless emotion

JWPMP profile image
JWPMP in reply to Survivor1965

and Heavy

So there has more research of recent as to other options. Intermittent Androgen Deprivation therapy(ADT), etc. Also, many years ago they used to use Bicalutamide as it did not reduce libido, testosterone, cause bone loss or brain fog, etc. It seems to work as well as Lupron in some cases . It is an androgen blocker as it blocks T from being converted to DHT and reduces the interaction with the prostate cancer. It actually increases T but also increases estrogen in the body. Some T is converted to E and is what provides the male libido, protects against bone loss, fatigue, and brain fog. Without ANY T in your system there is no E either and yes that is chemical castration which in most cases can be reversed. Physical castration cannot be reversed but T cream can actually give a man back some T levels so it is not close to zero. We need a balanced endocrine system but most doctors do not include an endocrinologist in the mix. I was diagnosed with PC Sept 2020 -GL9 PSA 9.76, one lesion. Pet Scan was clear. They wanted to remove my prostate and some lymph nodes followed by ADT followed by 40 radiation treatments followed by a bladder lift (about $150k covered by insurance). Instead of Lupron I chose Bicalutamide for 8 weeks followed by TULSA PRO ULTRASOUND in December 2020 ( $30k not covered by insurance) with minimal downtime and no libido issues. I currently do not have to take any extra drugs( no ADT, etc). You can ask for low doses of estrogen or megestrol which could help with some of his issues. The challenge is that most doctors think inside the box and may not be willing to help, period. He may not have a lot of control of his emotions and lashes out. It is not your fault, period. Hope this helps. Fight on brothers and sisters!!! ...Michael

JWPMP profile image
JWPMP in reply to onemichael01

very good info, thank you

I got a penile implant, top of the line best one. $50,000 surgery compliments of my insurance because my deductible was met. I recommend that anyone who has erectile disfunction because they had their prostate and nerve bundles removed like me to get this. True that the desire isn’t always there but I love my wife and we make it happen.

Keeps us closer. imho

A gem from all the replies. I'm in awe of the support here.

word

I think you have babysitting him for too long. He needs to take full control of his condition with every decision, and discuss them with you so you can be the supportive role. The situation should be switched so you don't find yourself in this predicament.

JWPMP profile image
JWPMP in reply to brucesam

Makes perfect sense, but he would just blow it off. He's already talking about stopping the medication after his RT. Sooo, here we are. All I had to do was not use that word and everything would be fine for the time being.Thank you though...

MCW-CA profile image
MCW-CA in reply to JWPMP

If you hadn't happened to use that C word -- a technical term used constantly in the PCa realm -- someone/something else would have one of these days, and probably soon, because it's just part of this scene. Thus the guilt really has to go: you didn't think up the word or its relevance to the topic at hand, and your use of it on a given day was essentially coincidence, so not any kind of crime against him, and not "your fault." Best of luck for your mom's recovery, and a break for you.

JWPMP profile image
JWPMP in reply to MCW-CA

Thank you very much...really appreciate it

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