HT a question for the wives

User

Posted 15 Oct 2023 at 07:57

DH is due to have his first zoladex injection tomorrow. I’m assuming he will be on HT forever or until it no longer works.

My question is how do you wives cope with what I am assuming will be a sexless marriage and how do the men cope? DH is 15 years older than me but has always had a much higher sex drive than me. If he were the age I am now and I were the same age as him, I don’t think we’d be together as I wouldn’t have been enough for him. Even now, ideally he’d have sex every day, though brachytherapy 9 years ago slowed him down a bit, it’s me that gets fed up, I roll away and pretend I am asleep. If he goes a week without sex, he gets in such a bad mood, snaps at the children and me, sulks in bed etc. it has always been the most difficult part of our relationship, but we do joke about it. A few mornings ago he did the usual, waking up early wanting it, I did my usual rolling away pretending to be asleep, but instead as I faced the other way, I had tears streaming down my face, I couldn’t control them, I never cry and I didn’t let on. But i will miss him being like that so much and never thought it would be something I’d say. I feel like I’m going to be mourning the man he was. I also know if the roles were reversed he wouldn’t stick around as he’s really struggled with my lack of libido since hitting peri menopause. He’s been begging me to get hrt in the hope it will increase my libido.

I have had zoladex injections myself 24 years ago. I hated it so much that I refused my 6th injection. Mainly due to hot flushes and 2.5 stone weight gain, but I generally felt rough too. Actual menopause symptoms, now I’m that age are worse in some ways, but I know there is an end in sight, so that gets me through, obviously there won’t be an end in sight for dh as far as coming off then goes, I hope he doesn’t suffer like I did as he has no choice but to stay on them. Lack of sex causes his bad moods now…either that will stop happening, which will be a plus, or he will be worse. I am about to find out.

So I just thought I’d ask how the wives cope. I know we need to just accept it, but I can’t help feeling life will be massively differed. The HT is keeping them alive. DH is fit and well with no symptoms.

User

Posted 15 Oct 2023 at 10:56

Hello Wiosal,

Obviously I'm not a wife so not really qualified to comment from that angle. I read your post a few times to understand it best I can.

The HT will reduce his libido. That will reduce his desire for sex, but some men will still retain some, while others won't. It will also reduce his ability to get erections and to reach orgasm, but not to zero for all men - about 20% of guys on HT can still get erections, and things like Sildenafil/Viagra, Tadalafil/Cialis, porn, etc can help, but the chances of having successful intercourse are much lower than that (some research suggests 5%, but I'm surprised it's that high).

It's impossible for me to predict how he might react to these changes, and what the extent of the changes will be in his case. It might be that his libido changes to match yours which could reduce the mismatch between you. It might be that the lack of orgasms and the resulting endorphins, possibly not even being able to go off and bang one off by himself, might wind him up more. (Many guys do this, often thinking their partners don't know, which may or may not be the case.)

There are things which might help him and you as a couple in any of these scenarios, and this is where psychosexual conselling could be really useful. Actually, given what you've said, I would have recommended this for the two of you for your current situation anyway, but the HT will change things further between you. You could both learn new things you find enjoyable to do that help you stay close, even when erections or penetrative sex might not be possible. There is usually a long waiting list for this on the NHS, so you could ask for it now, and by the time it comes up, you will have some idea how the HT might be changing things further. You could get a faster appointment if you need it and if it fits in your budget privately, which is typically around £200 per session.

User

Posted 15 Oct 2023 at 11:53

Thanks for your honest reply Andy. We both feel we are on borrowed time at the moment as far as the bedroom department goes. Of course dh thinks the same with his diagnosis too, but while he feels fine and has no symptoms we are trying not to think that far ahead. It made me laugh when you said about men “banging one off” dh has always had to do that, though quite happily in front of me. Doesn’t bother me at all. When he has no sex drive on HT I wouldn’t do the same. No way I have too many inhibitions!

It is all so much to take in. Dh’s original diagnosis 9 years ago was Gleason 3+3 and apparently only small growth that was contained in the prostate, for which he had brachytherapy, 9 years later after 4 years of rising psa it is now in his lymph nodes high in his tummy. Though it’s cured in his prostate as nothing seen there with psma scan. We thought it would come back in the prostate eventually, we weren’t expecting this diagnosis. I’ve no idea how it got to the nodes with no tumour in the prostate. I’m assuming the original diagnosis had to be wrong and that it had spread and was laying dormant. His psa was 0.01 for 4 years. DH always said he didn’t want a treatment with hormone therapy and wouldn’t even have it if it were suggested. But of course now it is the only choice he is going ahead. I fear he may refuse after a while. With a psa doubling time of just over 3 months he needs the HT. One of dh’s good friends had his prostate removed 3 years ago and his wife has now left him due to him losing the ability to have sex. He has the full desire still though. That wouldn’t bother me so much if the desire was still there because I’m sure there are other things you can do instead. For me the fact dh will lose the desire is what I find hard to deal with. It’s a massive part of him. Of course I will have to have learn to deal with it and I’m sure I will. His life and health is way more important. As I said on another post, dh’s consultant is very laid back. He just said you’ll be around many years yet like your parents were. His dad was 27 years older than dh now. Dh won’t last that long with this diagnosis. The consultant didn’t even tell dh that it is now incurable and I’m fairly sure it’s a stage 4 going by google. DH says I’m wrong and doesn’t think he’s on hormones long. I’m guessing it’s forever. Consultations are on the phone only. So the next one in November I will speak to him too.

User

Posted 15 Oct 2023 at 12:53

Hi Wiosal,

I can only speak from my own experience and each man is different but it need NOT be the end of your sex life if you learn to adapt. I have zero libido, no drive to have sex at all although when we get started I can get immense pleasure and orgasm…not every time but more often than not with the help of a really good male masturbator. Penetrative sex just does not interest me, I just get nothing from it and neither does my wife at the moment , probably because of me. Instead we make do with sexual outercourse and it works well for both of us. I have found certain sorts of my body have become extremely sensitive to touch and it is the most wonderful feeling. So we both have a lot of fun and pleasure…No! It’s NOT the same but it’s still VERY good😊

So my advice is for both of you to stay positive about this, experiment and then adapt….and have FUN!

all the best,

Derek

User

Posted 15 Oct 2023 at 16:54

HI Wiosal

I know from personal experience that men with high libido have to have a lot of regular sex. After my treatment 12 years ago we had to re-establish our sex life. We openly talked about how we were going to do it. The details of how we did it are not important but dealing with the new normal is probably the same for most couples. In our case, during the rehabilitation process, whilst we were not able to have penetrative sex, we made sure that we gave each other what we needed. Initially we masturbated each other or individually with the help from each other. I suffer from ED and climacturia so it wasn't easy. What helped us get through this was that neither of us felt abandoned sexually. What I needed most was some reassurance that I will not have to put up with the lack of sex/orgasms and I made sure that my wife was equally reassured. We now live with the new normal which includes penetrative and oral sex or my wife will help me to masturbate if she does not feel like it or vice versa, which is does not happen very often. One advice I would give to all couples is that no matter what are your circumstances do not under estimate the power of masturbation both mutual or individual with the help of your wife/partner while you re-establish a new normal. You may wish to follow the following link:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

Edited by member 15 Oct 2023 at 18:29 | Reason: Not specified

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 15 Oct 2023 at 17:27

Pratap thanks for reply. It looks like you have had surgery and made a great recovery. It’s the fact that HT is probably for life that is getting me down the most. DH will go from someone with a very high sex drive, to possibly no sex drive at all over the next month, is going to take getting used to. If dh had been told hormones for 2 years or surgery that he may get over it would be very different as there is a goal to aim for and a hope. This would happen naturally over time for people without this cruel disease. At the moment DH doesn’t think it will affect him much, or he tells me I’ll have to have an affair. I don’t want an affair, obviously.

Thanks Derek. You spoke on another of my posts and make it seem not so bad.

User

Posted 15 Oct 2023 at 17:39

Wiosal,

The strange thing is I that I had a high sex drive and thought I would get frustrated, but in fact the exact opposite! Because I have no libido, I don’t get frustrated, only a bit sad that my life has changed in this way. However if I had surgery and still had a libido but couldn’t do anything with it, I think I would be far more difficult. Of course that doesn’t help you but as Pratap has said there’s still lots of fun to be had and you might find you actually enjoy it MORE! As long as you are willing to experiment😊

I’ll be very interested to hear how you DH feels after a month or two on HT. Keep us posted.

Derek

User

Posted 15 Oct 2023 at 17:50

Hi wiosal I know where you are coming from.we had a great sex life until the wretched diagnosis things are just not the same now .so we decided to forget about the sex no fun in having to do this and that to achieve something that's a million miles away from the spontaneous sex we had before all this happened.its either having sex or not we have our memories and seem to be closer these days 👍 gaz

Edited by member 15 Oct 2023 at 17:51 | Reason: Mistake

User

Posted 15 Oct 2023 at 18:15

Thanks for your honest reply gaz. I have only ever had one partner and that is dh. I was a late starter in that department. 28 years later and I feel sad that it will most likely come to an end early.

User

Posted 15 Oct 2023 at 18:35

It is sad we miss the old times but you still have each other I had 37 fraction's off radiotherapy and hormone therapy for 18 months for Gleason 9 psa been 0.01 for nearly 2 years so see how we go I hope your treatment goes well and you get used to the new normal at least we are here and battling good luck to you both gaz 👍

User

Posted 15 Oct 2023 at 18:47

Thanks gaz. DH had brachytherapy. He didn’t want radiotherapy as they said he’d need hormones alongside. He has taken 5mg of cialis daily since Brachy. I don’t think he needed it at first but he insisted.

I hope your psa remains low. Dh’s remained at 0.01 for 5 years. It only slowly climbed for the next 3 years. Everyone kept saying it was fine to climb back up. Then it jumped from 2.0 to 2.7 in 3 months and up to 4.9 in the next 3 months.

User

Posted 15 Oct 2023 at 19:33

Derek I thought I’d make you laugh. Pratap has added a link on here to another thread. On that thread you put a link to a device you recommend that has helped you with your sex life. I tried to open the link but as we have children my wifi hub is blocking it. I have no idea how to unlock our hub 😂

User

Posted 15 Oct 2023 at 20:07

Hi @Wiosal. Oh gosh almost don't want to reply as I've so much to say! Read my bio and it will tell you the most important stuff...about our journey with this...not wanting HT at any cost and ending up with incurable cancer because he didn't have it. So have it!!

Are you being offered SBRT to the lymph nodes in question? We were after a PSMA scan and if we had had HT for a few weeks first we probably would have caught the cancer then. But as he didnt want it and wasnt advised, so now we have ended up on it for life. It wasnt so bad the first 4 months but then we had Enzalutamide added in on top and that was awful. That went on for 2 years and now back to just HT now. We have had penetrative sex twice in the past 2 months with no cialis and no pump!! True it's a bit tiny and floppy but hard enough to use and cause the desired affect! (Size clearly doesnt matter!!) So sex on HT is not impossible in our case but it's rare for him to want it and now sadly I find it hard to want someone who doesnt want me that way particularly...through no fault of his own. Still if he makes an effort enough to get me interested and I make a bit of an effort back...he and I both end up very satisfied! Floppy Willy Orgasms are the way to go as my OH (and Steve76 here) says!

As for your lack of libido and inhibitions..that's so sad. I envy you having a man who wants you so much! I've always been far more interested in sex than my husband and was lucky if we had sex once a month for a lot of our marriage (once we went 10 months without it🙈) until ironically about 9 months prior to his diagnosis and surgery, I gave him a talking to and things took off! Knowing a little while later that our days were numbered sex wise, we were up to almost every day until the operation..well at least 3 times a week...a lot for us. ! I was going to say you should really consider HRT yourself but if you were on Zolodex does that mean you had breast cancer? If so, HRT not an option BUT if not??!!! Its a game changer esp if you get TRT too. (Testosterone...the irony!!)

Main message...let him take the HT for him to have best chance of recovery...and work on your own issues whatever way you can. Important to keep some physical closeness there. I really miss it😥

Also he can choose to think his life is over or he can get on with living it. You too! Best of luck!

User

Posted 15 Oct 2023 at 21:08

Thanks for your reply Misty. He hasn’t been offered sbrt he was told he can’t have any more radiotherapy. I am assuming that’s because he had brachy. Apparently the cancer is only in lymph nodes behind his belly button, none in his prostate. So it seems silly for there to be no cure when there is no tumour feeding it.

I wouldn’t say I have a huge lack in libido. Just less than DH. I am happy with once a week, or 2 weeks at a stretch, but he’s more an every day kind of guy. Though he’s slowed the last year or so, but would still be up for it if I were. But 15 years ago when he was my age he was a twice a day person, I’ve never wanted it that often. So it’s always been a bit of a joke between us. I’ve often asked my girlfriends whether my dh is normal as I’ve only been with him. I’ve said I wish he would slow up. So now I can say be careful what you wish for. Yes he’s having the HT no question about not. Apparently some other drug is being added a month later. There won’t be a recovery though…I think it’s a case of HT until it stops working.

No I haven’t had breast cancer, I had endometriosis. I needed a big op. So the zolodex was to shrink everything up so they could operate. I put on so much weight and generally felt rubbish. The hot flushes were worse on zoladex than they are now for how intense they were, I got much hotter than I do now, but I can have way more a day now. But I can also go weeks without any, whereas they didn’t go away on zolodex. I get night sweats now too, I didn’t get them on zolodex and I certainly didn’t get the brain fog on either. But I probably wasn’t on it long enough as I refused month 6.

As I said above dh is on cialis. He will continue on it. Though I did read years ago that in a study in Germany, of men who’d had prostate cancer, those on cialis were way more likely to see their cancer return than those not taking it. Something to do with it encouraging testosterone to be produced. So I wasn’t keen on dh taking it. But he did and will continue to do so.

Sorry to hear your dh is also on HT for life. I will look up your story. I do feel very selfish and feel i am only thinking of myself. But I can’t help feeling dh is going to change so much. I also know how rubbish I felt on zolodex and I can’t imagine having to stay on it indefinitely. I am not even going to think about what happens when HT stops working. We have 3 boys, the youngest is only 14 the next one up is at uni and the oldest has finished uni and is now travelling. We haven’t told the boys as feel there is no need yet. Dh has 2 older children too. We have told them. His daughter had breast cancer a year ago in her early 30’s so we found out she and dh carry the braca2 gene. So I guess we are fighting that too.

User

Posted 15 Oct 2023 at 21:19

Misty your part about going without for 10 months, if that was dh going without, he would have left me. I know he would. He’s always said “if you don’t get fed at home, go to the cafe” He’s always been so bad tempered after a week without sex. That’s why I said if the roles were reversed I don’t think he’d stick around. Maybe he would. I don’t know, it’s not a fair comparison it’s beyond his control.

User

Posted 15 Oct 2023 at 21:37

Its crap isn't it! I was only in my 40s and my guy early 50s when he got it. Our youngest was only 11 and the other two were 15 and 18. We had RP and thought we were all good but back in 2.5 years. A few cells must have escaped ...probably what happened to your guy. There doesn't need to be a tumour feeding it. However we are 3 years into HT now and going good. His PSA didnt go up when he stopped the added Enzalutamide so the HT is containing it for now by itself...long may that continue. Regarding your husbands drive...I wouldnt like sex more than 2 or 3 times a week tbh...quality not quantity, but I really didnt like once a month either! However my husband, is wonderful and I love him dearly so you deal with these things! So many more good things and we are 31 years married! I met him aged 19. Lymph node involvement is technically stage 4 I think but nowhere near as bad as in the bones so hopefully the HT will work well. If your OH has very high testosterone that's feeding it...removing it will do the trick. My guys cancer was surviving on very low testosterone so I thought the HT wouldnt be as effective for him but so far so good. Living our best lives and once we got over the shock of it coming back (took me quite a while but Covid lockdown helped ironically) we are really enjoying and appreciating our lives in an intense way we might not be otherwise. It kind of focuses you on what matters!

User

Posted 15 Oct 2023 at 21:58

Misty…first time round our youngest was only 5 when dh was diagnosed. I was 42. Dh was 57 as he’s older than me. It is our wedding anniversary weds. Only 6 years. But we’ve been together since 1995.

See the consultant didn’t mention stage 4. DH doesn’t believe me that it’s stage 4. Google told me so.

User

Posted 16 Oct 2023 at 00:25

Wiosal you guys should get a second opinion.

He has a single recurrence outside the area of the original treatment. FFS the lymph nodes could be surgically removed even if further RT is out of the question.

User

Posted 16 Oct 2023 at 00:31

Misty did your OH have salvage RT to the prostate area or just the cancerous nodes treated? Are you sure it's not come back in the prostate bed?

User

Posted 16 Oct 2023 at 06:55

Francij1 DH doesn’t know how many lymph nodes as he didn’t ask. It was a telephone conversation. He just said the brachytherapy has worked as there’s nothing on psma can in that area. However it has spread to the nodes just behind your belly button. He said you can’t have anymore radiotherapy. That was it. I will as though at the next phone conversation.

User

Posted 16 Oct 2023 at 09:01

Originally Posted by: Online Community Member

Wiosal you guys should get a second opinion.

He has a single recurrence outside the area of the original treatment. FFS the lymph nodes could be surgically removed even if further RT is out of the question.

I am assuming they don’t offer to remove the nodes because once it is in the nodes it is free to go other places, so could be in other nodes too or further afield. Psa was 4.9 at the time of scan. The scan was 7 weeks ago. So it’s had time to travel (baring in mind psa had doubled in just under 4 months previously)

As I said above dh had brachy. So I’m assuming he can’t have any radiotherapy at all now as it radiates a much larger area than if he’d had beam therapy.

User

Posted 16 Oct 2023 at 10:29

Wiosal, do you know the name of the lymph nodes involved, my correspondence to the GP gave the names /location of the nodes. If you have details of the nodes it may be worth a call to the nurses on this web site. I had salvage RT of 66gys to the prostate bed then had 40gys to one node and 30gys to another node. I moved from the NHS to the private sector because they will treat more locations.

Some nodes may be inaccessible or too close to other organs. Not sure at what point cells become a tumor, but my oncologist referred to mine as tumours,the radiation staff did say my second lymph node tumor was the smallest she had ever treated.

Thanks Chris

User

Posted 16 Oct 2023 at 10:37

Originally Posted by: Online Community Member

I would challenge this. If it's in too many lymph nodes, it won't be possible.

What I have seen is that if your hospital can't do SBRT, then they may not offer it, but you could ask to be referred somewhere that does do it for a second opinion.

Previous brachytherapy won't be a reason not to do it unless the lymph nodes are in contact with the prostate.

Edited by member 16 Oct 2023 at 10:38 | Reason: Not specified

User

Posted 16 Oct 2023 at 13:37

Thanks Chris. The letter to the gp doesn’t even mention nodes. It just says due to rapid psa doubling time, please administer zoladex ongoing. DH’s gp was surprised to hear it is in the nodes.

User

Posted 16 Oct 2023 at 14:40

Wiosal surgical removal is performed where appropriate.

There is an interesting discussion here from the originator of treatment for oligio metastatic PC:

https://youtu.be/wmfFreLCxBo?si=AW77NZxCKfSeXn1z

If you look at other Dr Kwon videos he discusses all of the options.

User

Posted 17 Oct 2023 at 10:46

I am 10yrs older than my wife, if anything this condition has been a very humbling experience. I am one those blokes who used to think with their d!cks and would not hang about in a sexless marriage and if I did I would be pretty unhappy! However, getting this condition has humbled me and shown me there is more to life than a hard-on. The lack of sex on tap, (due my inability to maintain an erection) has really brought me off from my high horse. My wife incidentally is at the onset of menopause, been bleeding constantly for the past 2.5mths, sex is the farthest thing on our minds at the moment. In a way I feel it is karma that I had my condition first to help me better understand that there is more to life than having sex! I am fairly certain, if I did not go through my experience and with the way my wife cared for me, I would have strayed when she went through this phase!

User

Posted 17 Oct 2023 at 11:16

Originally Posted by: Online Community Member

As I said above dh had brachy. So I’m assuming he can’t have any radiotherapy at all now as it radiates a much larger area than if he’d had beam therapy.

This is the wrong way around. Brachytherapy has a quick treatment drop-off at the edge of the target area, whereas external beam has to travel through tissue to get to the target area and also passes out the other side of the body, so it treats a larger area. That can have advantages in that it will often mop up micro-mets outside the target area, versus brachytherapy which spills outside to a much lesser extent, but that also means a higher effective treatment dose can be delivered with brachytherapy.

So the fact he has brachytherapy means recurrence outside of the original target area is more likely to be treatable with more radiotherapy in the form of SABR/SBRT.

User

Posted 17 Oct 2023 at 13:48

I am fortunate that my wife is not that interested in sex being in her thirties she isn't that bothered we seem closer after giving it up after the spontaneous actions were no more we didn't want to use pumps pills ECT for an act that is a million miles off what it used to be she also feared it might cause a relapse we seem closer than ever these days sad but true

User

Posted 17 Oct 2023 at 16:15

Just curious. Is you wife her thirties?

Pratap

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 17 Oct 2023 at 16:17

Thanks Andy. I just feel there must be a reason it was not offered. DH asked if he could have radiotherapy and the consultant said no you’ve had your maximum dose.

User

Posted 17 Oct 2023 at 16:21

Gee baba. Thanks for your honest reply. I think if the tables were turned DH wouldn’t hang around. But I’ll never know, maybe he would. Each time I got pregnant (3 sons) the first thing he said was “great, no sex for a few months when it arrives”

User

Posted 17 Oct 2023 at 16:34

Yes 38 years old and lovely 😁

User

Posted 17 Oct 2023 at 18:38

Gaz I’m a quite a bit older than 38. I wish I could say I have no interest in sex. I have a much lower sex drive than DH but I can’t bare the thought of never again.

User

Posted 17 Oct 2023 at 18:54

I see where your coming from wiosal it is sad I know but it is one off the horrible things with this desease good luck to all who get less off the side effects and can manage sex as normal but it kills the passion when you have to do this and that too achieve something that's nothing like what you had previously I am lucky I have a partner that doesn't put a big thing on sex and we have a lot in common that keeps up close

User

Posted 22 Oct 2023 at 00:53

If you can find old threads from a past member, Alathays, you might feel a bit better. While most men lose their libido very quickly once the injections start, it doesn't happen to everyone and Alathays is a great example of that. He never lost his desire or his ability to have penetrative sex, even in the end stages when he was trialling things like abiraterone / enzalutimide!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Oct 2023 at 14:24

Thanks for reply Lyn. I wondered why I hadn’t heard from you, your posts have always been very knowledgeable. I’m expecting dh’s libido to go…it just feels strange that he will change. As long as he doesn’t get frustrated about it I guess I’ll learn to live with it.

User

Posted 22 Oct 2023 at 15:51

The men I know on this treatment path, don’t get frustrated, they just lose interest in sex because they have no libido. I would think he would more likely to get frustrated if he had libido but couldn’t use it.

I get sad rather than frustrated at times. I was in a car park in Fuerteventura today driving my car out and stopped to let a couple cross my path. The man gave the woman a playful pat on her bottom to get her to hurry up and I thought to myself…when I ever did that before(to my wife of course 🤣🤣) I got aroused….and now…nothing😟…except love, which I’ve learned to accept.

User

Posted 22 Oct 2023 at 16:14

Yes I can imagine it’s sad. I was feeling sad at the thought of him changing. But I’m slowly coming round to it. DH has been on bicalutamide 3 weeks (only on for 4 weeks) and one week into zoladex, he is very pleased at no side effects from either yet. Apart from itching on his tummy and top of legs (I hope that’s not a reaction to zoladex)

I think the side effects won’t start until he’s been on zoladex 3 or 4 weeks. I know when I was on it I had no side effects for the first month.

User

Posted 22 Oct 2023 at 16:45

Funnily enough one one of the guys at Maggies on Friday was saying he’d only been on Prostap for a few weeks and got a mild flush. he said to his wife ‘I don’t know what all you menopausal women are complaining about!’ Then Bang! I was the same!
He thinks differently now🤣🤣🤣

My joint aches started about 9 months into the HT treatment but I think it’s different for everyone, hopefully DH will sail through it and even keep his Libido(although I would be worried about the HT not working if that had happened to me!). When if get back from holiday I’m going to get a full set of blood tests(privately) just see how healthy I am and if I have ANY testosterone left in my body.

User

Posted 22 Oct 2023 at 17:41

DH already has a bad back. He had an mri 7 years ago, they said degeneration of the spine and the only thing they could do was operate, they said they’d put a cage round the effected bones. DH turned that down but it is getting worse. He has days when walking is too painful, but after a few days rest it’s ok again. He has to remember not do things that upset it all, like leaning over cutting hedges. He was convinced with raising psa the cancer would be in his spine, but it didn’t show it there. I am a bit concerned how zoladex will effect his back. But the gp told him it doesn’t effect bones. Google tells me different. But I really should stop looking on google. I’ve already seen that a stage 4 prostate cancer (I’m assuming it’s stage 4 as consultant hasn’t actually said) along with the brca2 gene isn’t good. So I’m trying to not look stuff up now.

User

Posted 14 Nov 2023 at 20:50

I have 2 threads going at once. But I thought I’d add onto this one as decho asked me to say how dh gets on a month in. Dh has been on zoladex 4 weeks and a few days. He’s tired in the eves. No hot flushes yet. No reduction in libido yet really, not enough for either of us to notice. But definitely a reduction in the size “down below” much to his annoyance. Though there is enough there to be usable. I’m assuming the libido reduction will come eventually, I think he probably had high levels of testosterone, so it might take longer to reduce. I’d like to say if it stays at this level then we’d both be happy. But if it stays at this level then it won’t help the cancer. Dh is having another drug added at next consultation too.

User

Posted 15 Nov 2023 at 18:35

Thanks for the update Wiosal, kind of surprised that size has decreased after this period of time...need to get pumping ASAP, that has certainly helped MY size, I’m glad DH doesn’t have hot flushes yet, maybe he’ll be lucky🤞

Ive never had a testosterone test…wish I had at the start so I could see how it’s decreased but I’m going to ask for one when I get my next PSA test in December. I’m just hoping that my PSA has fallen again…or at least stayed put🤞🤞🤞

It’s great for both of you that he still has his libido and long may it continue. If it falls away, don’t give up(unless you want to) because you can still have a lot of fun. I find that I have zero interest in having sex, but when I get started with the right foreplay I can still have intense pleasure, as can my wife, it’s just different.😊

Good luck to both of you.

Derek

User

Posted 15 Nov 2023 at 19:18

Originally Posted by: Online Community Member

Is it worth trying to get a pump if he’s on hormones forever? I can see the point when coming off hormones one day. Not sure how we’d go about that. The brachytherapy reduced it in size, but the HT has definitely reduced it even more already.

I wonder if they will do a testosterone test on dh. I guess if HT is working there’s no need.

I am sure libido will drop. It’s just taking longer. Especially when they add the other drug.

Fingers crossed for your psa. I am on a wives prostate cancer group on Facebook, someone posted that her husband has still got undetectable psa after 9 and a half years on HT. So it can hold it at bay a long time.

Edited by member 15 Nov 2023 at 19:18 | Reason: Not specified

User

Posted 15 Nov 2023 at 20:31

Originally Posted by: Online Community Member

Each time I got pregnant (3 sons) the first thing he said was “great, no sex for a few months when it arrives”

I have 2 sons, and used to be as tactless as that. After the birth of our first child, I can remember asking a doctor when me and the wife would be able to have sex again. He said, "For God sake man! I haven't cut the umbilical cord yet!" 😉

Joking apart, I know how serious and sad, sexlife issues can be because of this disease. I read somewhere recently that sadly relationships, where couples are coping with prostate cancer, are more likely to break up than normal. It's certainly tested our marriage. My wife is 10 years younger than me, and much more desirable. We had an active sex life which was severely impacted by my prostate cancer treatment. She is much better at dealing with it than I am. I still feel emasculated, frustrated, insecure and depressed. Sometimes, these emotions bring out the worst in me. I get very grumpy and moody and isolate myself. She is much more upbeat and optimistic.

Over the past year we're gradually accepting the lack of rumpy pumpy, but it isn't easy. We go out more and I try my hardest to find other ways to make her feel as special as I used to. I'm trying to fill the sex void with more romance. It appears to be working.

Adrian.

Edited by member 15 Nov 2023 at 21:25 | Reason: Typo

User

Posted 16 Nov 2023 at 08:34

Adrian.

Thanks for reply Adrian. Yes one of dh’s clay pigeon shooting mates had his prostate out 2 years ago. His wife has left him. He told dh he’s tried viagra etc. but nothing works and he’s now given up trying. That’s sad. Especially as he’s not on HT so the feelings must still be there.

That’s great your wife is optimistic. I’m not sure I am. I am trying to be. I’d never leave dh though…his health is the most important. I’m more worried about what all the drugs he is going to be taking are going to do to his health in general than I am about sex. He’s fit and healthy at the moment. I am very much of the mind that drugs shouldn’t be taken unless absolutely necessary, which these obviously are due to psa doubling time being 4 months. There are so many other things he’s now at risk of on HT.

User

Posted 16 Nov 2023 at 10:35

Originally Posted by: Online Community Member

That’s great your wife is optimistic.

But the situation, does still get on top of her. To get some extra support, to help her deal with my moody behaviour, she is trying to be referred for counseling with an organisation that operates from a local hospital and deals primarily with the partners of cancer suffers.

To add to our problems, about 5 years ago, I had an angiogram which showed I had badly calcified arteries. Initially, this was sucessfully dealt with by medication. I was shocked because I thought I was fit. Until I was almost 50 years old, I used to run 5 miles everyday and do 5 x 80 press ups daily.

Unfortunately the heart condition, although not really causing me any discomfort, caused problems to my treatment options, when they discovered prostate cancer. The anaesthetist at pre prostatectomy assessment was concerned that my heart may not cope with the op. My cardiologist thought otherwise, this dispute delayed the op two months.

I got through the prostatectomy without a hitch, but sod's law, two months later (as if to prove the anaesthetist right 🙂) I had a minor heart attack and was rushed to hospital. I wad there for two weeks, before they drilled out some of the calcification, and fitted two stents. Great I thought I've now had a complete refit.

Sod's law again! Last week, the chest pains returned, and their now looking at more drilling and stenting, or possibly a bypass. I've been warned not to do anything to strenuous, that's why I spend a lot of time on here. 😄

Honestly, at times, I feel that unlucky that if I fell in a barrel of boobs I'd come up sucking my thumb. 😄

However, I'm always aware that there are couples that are a hell of a lot worse off than us. My health issues are relatively minor compared to others. My two lads and two step-children are in their 30's and 40's and I'm retired so there are no work problems. My heart (damaged though it maybe 😉) goes out to you younger couples dealing with prostate cancer, who have younger kids and still have work commitments. I'd struggle to cope with that.

Adrian

Edited by member 16 Nov 2023 at 16:33 | Reason: Additional text.

User

Posted 16 Nov 2023 at 17:37

Thanks for reply Adrian. You sound like you have a lot going on. You are only a year older than dh. He is a retired farmer but always seems to have stuff to do. He was working full time 9 years ago when he was first diagnosed and had the brachy. He worked throughout, just took it easy for a week after the procedure, but farming doesn’t stop. Our youngest was only 5 back then. DH has a bad back but other than that no health problems, apart from obviously the prostate cancer, but had no symptoms and no symptoms when first diagnosed either. We walk the dogs twice a day, I work so he often goes on his own, especially as it is dark in the morns. We need to walk at 7am if I’m walking, which we often do. He walks fast most of the time too, I struggle to keep up sometimes.

I have wondered whether DH is going to get moody on HT. but I think the moods he has often been in before HT have been due to too much testosterone. So I think he may actually be less bad tempered. Only time will tell.

User

Posted 16 Nov 2023 at 18:10

I was only on HT for a month whilst they decided whether I could or couldn't have prostate surgery. At that time they seemed to think RT was the more likely outcome and wanted to slow down disease progression.

I'm usually quite a laid back bloke but medical issues have frustrated me and I've definitely become more moody and bad tempered.

I very sincerely wish you and your family well.

Edited by member 16 Nov 2023 at 18:19 | Reason: Typo

Notification

Join the online community now.