Tamoxifen and Marriage

[Pasiflorina]

I agree with Jill1988 we can always reach for help to others, go look for a charity or free counseling

[Jill1998]

I hope given time she feels more positive .Maybe you could seek

some support / counselling to help you  in the meantime - local cancer charities often offer free counselling / complimentary therapies to partners as well.

[Vinny]

Hi, Thanks for the reply.

      I have mentioned some sort of counselling to her but she just point blank refuses to even entertain the idea that it could be in part due to any of the treatments. My heart is broken. I love her and my family so much. Sadly I fear that this is a decision she won't come back from. I hope everyday that she changes her mind but she is such a strong minded lady, one of the things I love about her. 

[Jill1998]

Vinny - it also takes time for things to settle hormonally after ovary removal(a couple of years )  - the sudden loss of oestrogen can also  cause severe anxiety - this happened to me - it took me a good 18 months to claw myself out of that hole - bear with her - things will improve but it does take time .

[Jill1998]

Hi Vinny ,welcome to the forum .Cancer treatment certainly takes its toll on relationships - it's gruelling physically and emotionally for both of you .Last year is actually quite early days in terms of recovery from such drastic treatment - it can take a long time to feel even vaguely normal again  and the hormone meds can really impact also .Have you a Cancer charity in your area - they often offer counselling and complimentary therapies ( Indian head massage ,aromatherapy etc ) - could you suggest she goes for some support maybe to help her feel more relaxed and pampared ? You could also go for some support yourself on your own if she's not interested right now .Dont give up - it takes time and support to recover .Jill x

[Vinny]

Everything she has said is all "feelings" and "emotions". She has had anxiety, quite bad at times since Christmas. But refuses to speak to anybody. Anyone had similar experiences?? 

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@Vinny wrote:

My wife and I have been together for 18yrs, married for 7. She was treated for early breast cancer last year and had a double mastectomy and reconstruction. She also had both ovaries removed and is on tamoxifen. Our relationship had always been good and great at times but now she has pushed me away. I have always done my best to support and look after her and this came as a bolt out of the blue. Sadly she just won't entertain the idea that her "feelings" are anything to do with her treatment. Our marriage has fallen apart and I just don't know what to do. 

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[Vinny]

My wife and I have been together for 18yrs, married for 7. She was treated for early breast cancer last year and had a double mastectomy and reconstruction. She also had both ovaries removed and is on tamoxifen. Our relationship had always been good and great at times but now she has pushed me away. I have always done my best to support and look after her and this came as a bolt out of the blue. Sadly she just won't entertain the idea that her "feelings" are anything to do with her treatment. Our marriage has fallen apart and I just don't know what to do. 

[Lavabawl]

I remember how my fiancee was worrying about getting married - I stayed around and was ready to help anytime. She had some troubles with being open, but I did everything to get her share her fears and I succeed. We got married a month later after her chemo (If someone is lloking for cambridge wedding photography, here's the company that takes an active role in making a great occasions).

[Jill1998]

Tracey - it may also help you to ring the BCC helpline they are great .  0808 800 6000 .

[Jill1998]

Most of the suggestions are not hormone based .Sounds like you need time to recover and heal before you are in a place to consider sex- could you find other ways to be intimate / close to your husband ? It's a shame he won't consider relate or similar but not unusual -hopefully he will come round to that .Hope things improve for you physically soon 🤞🤞

[TraceyBritten]

Thank you - I’ll take a look - unfortunately I can’t have anything with hormones as the cancer is PALB2 aggressive and hormone fed.  Plus it’s my scars that are the most painful. Thank you x

[Jill1998]

https://forum.breastcancercare.org.uk/t5/Hormone-therapy/Problems-with-quot-Ladybits-quot/m-p/127889...

[Jill1998]

https://forum.breastcancercare.org.uk/t5/Sex-and-relationships-private/gp-p/Sexrelationship

[Jill1998]

Hello Tracey ,welcome to the forum .Sorry you are having /have had such a rubbish time .Sex certainly isn't a priority when you have been so unwell. .Cancer certainly puts a strain on relationships emotionally and physically and it can take a long time to get back to any sort of normality - there is a private sex and relationships group on the forum and a thread about things that can help with the sex being painful side of things .I will post you some links - hope things improve for you soon.Jill x

[Lisa0331]

As bad as you think you feel, how do you think she feels?  Get over yourself and be there for her, as I'm sure you would want if it was you   

[The other one]

Hi,

my wife is on Tamoxifen and Zolidex... 

I don't share the same experience... we are still young and could have had a longer better couple life, but the medication gave her early menopause and so strenght and libido are below ground level. She shouts a lot to the kids, but in her defence they are hard work (all 3 below 7) :-).

I should actually mention only libido as although she feels like an old lady, she still goes running and keeps fit... she is much fitter than me, always was!

She put on a little weight but that's normal... and I find her attractive, regardless of her phisique... but she is not interested in sex.

I do understand it. The cancer (stage 4! Metastasis to the liver, 3 small children, a house to look after, the fear of progression, the surgery, the recovery...) 

Sex is at the bottom of the list!

I find it a little sad as i would have enjoyed a little more "action" before becoming decrepit but I console myself with the though that i was never this great lover... hence we both did not waste too much!

and there is so much more than sex in a couple life

😞

I know very sad thought ... i guess I am a sad person and a little pathetic!

Bye

TOO

[Jobey68]

Sadly some do have really adverse side effects from Tamoxifen, personally I was ok mentally but physically it caused me problems with my joints especially my knees to the point I was struggling to move, I made the decision after 2.5 years to take a break from it and 10 months on I've still not restarted. 

I know ladies who with the support of their doctors and oncologists have come off of it early due to various issues, the benefits really do need to outweigh the risks and in my opinion living in utter misery isn't really living. I would suggest talking it through with the professionals again, someone who can give you a real insight in to the pros and cons and not someone who will say you just need to take it because we said so! 

I hope you can get back to some sense of normality, it's a tough old road but things can get better 😊

[MeNoUnderstand]

Firstly, thank you. Crazy couple of years as both my wife and I had been doagnosed with cancer only a few months apart. All good except we now we are dealing with this drug of crazy. Is there anyone that can tell me if it is worth considering asking my wife to give it up? I know it is the drug but can't remind myself early enough and now just get cranky back at her. She doesn't deserve my responses but I am not sure I am copping with the person that is now my wife. I am constantly attacked for any number of reasons, the kids are affected and I can see that she isn't happy with what she has become either. She has taken some breaks from and it is remarkable the differnece in person but the fear of not doing what the dr says scares her back into taking the drug. 2 years down on a 10 year sentence. I keep thinking as someone said earlier "this is not linving".

[HelenaR_BCC]

Hi Brtipete,

I'm sorry to hear you're feeling this way and just wanted to say that we are here for you.

You might want to consider phoning our free helpline on 0808 800 6000 if you'd like more support or to talk things through - all calls are welcome. The helpline is open until 7pm tonight and Monday-Friday, 9am-5pm, as well as Saturday, 9am-1pm. 

All the best,

Helena at Breast Cancer Care

[Britpete]

Hi Tired Hubby,

yup, it's a bugger innit.... I could write more but I'm sick of everything associated with cancer, hormones and treatments... I'm now having to try and navigate a divorce that I really don't understand. The way I'm currently feeling I think the only death through breast cancer won't be my wife's....

I'm in a dark place right now....

[Tiredhubby]

Pete, I get what you are saying. My experience is similar but my wife is now paranoid. It's terrible because she was never like this before her post op medication.

[Tiredhubby]

Pete, I get what you are saying. My experience is similar but my wife is now paranoid and constantly obsessed with my emails and texts etc alea

[Isolatedindividual]

It is so hard, isn't it.  My wife ended up coming off all medication. The oncologist tried scaring us into staying on meds by showing us my wifes life expectancy if she came off meds, but recognised the need when we pointed out we would rather 1 year of happier times than even 5 minutes of how life had become.  Within a month of coming off the meds life was SO much better for the whole family. My wife has had health issues since (probably largely a result of the beating her body has taken through chemo, surgery and radiotherapy), but life has been so much better than it was.

It might sound a really harsh thing to say, but there is a massive difference between being alive and living a life.  

Also, I am glad to see on this thread that I'm not alone in facing this challenge.  Hopefully my experience might be an encouragement to others that there can be light at the end of the tunnel.

[Britpete]

All gone wrong at this end....

My wife stopped taking anastrazole about 18 months ago, but I beleive the damage had already been done. Things got steadily worse resulting in her trying to stab me about six months ago. Im afraid the police were in volved and I am now as I write this about to sign my "statement in support of divorce". Im heartbroken and destroyed..

 People who know me beleive I should write a book...

 Take care...

[Tiredhubby]

My wife has been on Tamoxifen and a monthly implant which is a kind of slow release pill which she has in her abdomen. She initially has stage 2 BC right breast tumour removed without breast removal. We used to have a great relationship but now after three years she is now paranoid about my work colleagues especially female ones. She actively looks for anything as simple as work instructions from a coordinator at work and reads it as being flirty when it is obvious that it is not. Deleting contacts from my work phone that are essential for my job and getting aggressive about female colleagues that she sees as a threat. I can no longer stay away or attend any company functions or show any signs of being happy at work as she sees this as a sign that I would rather be at work than at home. If I tell I will quit work then she sees this as me blaming her for ruining my career. I have been blamed for working to hard and she sees me as having no back bone because I have been committed to striving to provide for my family of two boys so I am hurt. She never was like this and I feel I lost a fun soul mate. I don't know my wife anymore and she blames everything on me and this only began with Tamoxifen. I am being selfish when I say I have been cheated of my wife.

[Maldives]

Hi rich. I have been on tamoxifen about 4 -5 months now and i have noticed a huge difference in my moods. I am really fed up, dont want to socialise and i feel really depressed and no matter what i do or my hubby does i cant pull myself out of it. I am changing my antidepressant on monday to see if it helps. The problem with tamoxifen and other drugs like it, is, they mess up with your hormones which then buggers up your sex drive and moods. If your wife isnt on antidepressants it might be wise to speak to your family doctor. my doctor put me on them to help with my hormones when i was first diognosed
Unfortunately you end up taking more drugs to combat side effects. Hang in there and she will get sorted. I have found my oncologist is only intetested in the cancer side. My doctor deals with all the side effects
I hope it all works out for you sue

[Jobey68]

It would be really sad if after coming through all the cancer crap your marriage fell apart now, it's going to be tough and your wife isn't going to be the same person she was before, I know I'm not! I don't know if Tamoxifen is the reason for your wife's mood or of its just a result of all she's been through, just keep trying and be as supportive as I'm sure you are being, personally I love and respect my husband all the more now for how he held me up and kept us all going during the absolute worst time of our life's ,  I don't think Tamoxifen has changed me but whole the cancer experience sure has! 

[Jill1998]

I think sometimes it hits you both harder after you have finished treatment rather than when you are going through it is almost like post traumatic stress.This cancer thing takes its toll on even the best of relationships ,keep talking and keep trying .How long ago did your OH finish treatment ?

[Isolatedindividual]

Its so tough because my partner thinks she's doing really well. Realistically we sailed through all the treatments for cancer, now it's tough when we had thought life would improve. So far I have been accused of having affairs, being a pervert, and she has told me she's leaving me. I've tried talking but that just makes things worse. I'm not sure what to do, I'll just keep trying

[Jill1998]

Hi ,Im sorry you are having difficulties in your relationship due to Tamoxifen.Because Tamoxifen affects how the hormone oestrogen behaves in your body it can affect so many things ,mood ,sex drive,tiredness ,concentration and the list goes on,it's hard for both the person taking the meds and their partner. It may be worth your other half talking to surgeon /oncologist about the side effects and possible solutions .Some women decide not to continue taking meds because of the side effects but that is a difficult decision and you need to weigh up pros and cons with your surgeon/oncologist .Has your OH tried different brands of Tamoxifen as some seem to have less side effects than others,also there are are some low dose antidepressants that can help with side effects .Please try and talk to your OH if you feel able and work on this together ,it's a bugger that something that may stop cancer coming back causes so many problems.Hope things improve for you both .Jill.

[Isolatedindividual]

I'm so glad to find some other people have had similar experiences. I'm struggling to cope with the way tamoxifen is effecting my OH. At least knowing it's not just me seems to help.

[Pjs]

Hi pete, I am in exactly the same position as you,And when I say to my partner you've changed she also says exactly the same thing back to me too! She's been on tamoxifen for 4 years now and things ain't changed.

[Britpete]

Hi Rich.,

 Wow..... Someone who understands.. Im not alone then... Ive never used a "forum" befor, but what I've been reading has at least put my mind a little more at rest.. You end up thinking it must be me! My wifes stock comment to me these days is screaming at me "Its not me that's changed..... Its YOU!!!!".

 Keep in touch..

 Cheers, Pete.

[Britpete]

Thanks.. Hows things with "you and yours"?

 Pete.

[Britpete]

Hi Sam,

 Im not sure if I'm the "Pete" who I've just found on some sort of web site "thingy". Im not very computer literate (this is my first time on a "forum"), but I did email a guy in The States last November. I think that could have been the email that prompted other users talking about "Pete's problem" with a wife on tamoxifen who appears to hate me.....

 If I am the same Pete and youve had sight of my original email Im afraid to report that things are not really any better.....

 Any advise from other people in this god awful situation would be of great help.....

 Cheers, Pete.

[Janet_BCC]

Hi All,

You may also find the BCC publications Helpful: "In it together" and " Sexuality, Intimacy and Breast Cancer". I have attached the links. You can either download them or order a free copy.

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/it-together-partners-people...

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/sexuality-intimacy-breast-ca...

Regards

Janet
BCC Facilitator

[Guest user]

Hi El Katrano - my understanding of Tamoxifen is that the side effects range from nothing to the list you have probably seen, so don't assume anything. With hindsight, I would like to have been more prepared though, with knowledge of ways to cope. This is going to seem an obvious thing to say, but talking is our best strategy! And we needed a facilitator for that - I was a little sceptical about going to Relate but in fact it is more of a Macmillan counselling service than a Relate service, I feel.
There are a couple of excellent Macmillan booklets about cancer and relationship, which are so well written - 'Cancer, you and your partner' and 'Sexuality and cancer'.
Hi Richardh72. Falling out is all part of getting on I think, and maybe blowing a fuse has to be done sometimes! I've struggled with how my wife is with me when she hits a Tamoxifen low (now known as a Kevin moment, for Harry Enfield fans); one naturally wants to support someone who clearly feels rough, but in fact I think I just need to keep out of the way and wait for Kevin to go away again, which he always does!
My wife doesn't want sex at the moment and over the months (pre-counselling) I feel she has cut me off, to kind of ensure I don't expect a sexual relationship with her. Now we are re-working our relationship as friends and try to re-establish an emotional bond. Good luck to you guys, and don't hesitate to sound-off on here!

[Guest user]

Hi Pete

No offence taken at all, I know exactly what you mean when you meet someone in the same boat...it's more relief than you'd first think. I'm just sorry to see you and anyone else on this forum, and/or dealing with this whole situation.

Going to see a relationship counsellor would be my wife's worst nightmare. She hates people trying to get inside her head, telling her what she is supposed to be thinking etc....although I know that they are usually just a medium to get you both talking and only act as a third party to referee it essentially (a bit too simplistic explanation I know). She is also very wary about taking drugs like happy pills. But we/she needs to do something, as my grand idea about flicking the switch back to normal jogging after the treatment had finished (well as best as we can) has hit a brick wall.

Unfortunately my frustration in my own lack of understanding as to how she was feeling, blew a fuse last week. I guess i am more mentally tired than I thought and am angry at everyone else for being able to move on with their lives, have children, look forward to the future without looking over their shoulder etc etc. I have never blamed this on her or felt anger towards her for having BC and it's effect on slamming the brakes on our lives. It's just that I have always known what to do in most difficult situations but this time I am in a mental fug and can't seem to get us out of it. I then get more frustrated and when she reacts to something totally off the wall, misinterprets something or is completely unreasonable for no explained reason, the taught wire snaps and I end up having to leave the room. I pray that the Tamox settles down soon and we can start rebuilding but I am finding this bit more difficult than the diagnosis and treatment.

Apologies for the off load

All the best to you and yours.

Rich

[Guest user]

Urgh god I dread taking tamoxifen soon. I hate what it might do to my mood and to the me I know and love.
I don't want to be horrible, lose my sex drive, get mood swings etc. I'm a fairly level headed person.
I hope that me and my OH dont' have problems too.

It's hard for partners too obviously.

Love to you all xxx

[Guest user]

Hi Richardh72 I hope you will forgive me when I say I'm pleased I'm not the only partner struggling with this! Your point about Tamoxifen side effects making underlying issues worse is one that rings loud and clear with me. Frankly, we should have talked more, sooner. We are making progress and I can recommend the support of Relate/Macmillan. Macmillan are paying for 10 sessions with an excellent Relate counsellor and the sessions are heavy (at times) but fantastic.
We both have things we need to understand about each other; this is no blame game.
Neither of us have got as far as antidepressants and I will try every other alternative under the sun before I get that far.

[Guest user]

It would seem that I wasn't quite right with saying that my better half seemed happier and engaging. Almost as soon as I'd last posted the wheels came off quite spectacularly. It would appear that the Tamoxifen has added it's flattening effect to other underlying issues and it has all come bubbling to the surface. She's is great at playing her poker face and being a bloke I am not bright enough to recognise it all the time.....and I have to say that I should have been more sensitive to the signs and her behaviour instead of snapping in the way I did too (which didn't help). The Oncoloist and BCN seemed to see it as soon as we walked in the room and the onc has asked my wife to consider antidepressants. Has anyone else trekked down this path?? Apparently it would only be until she has got back up to where she was before this all started and once there she'd come off them, but my little fighter is not sure. The BCN was excellent as always and suggested alternative therapies and set up an appointment for a linked in therapist. I guess we have to go backwards to go forwards but this is just more toil........Oh well up and at 'em I guess..........

[Lucy_BCC]

Posted on behalf of Pete

First apologies for not responding to comments here more promptly. I thought I was subscribed to the thread but didn't get any notifications. I'll rectify that.
Thank you for sharing your experiences. I know everyone will have a different experience. Talking to a counsellor is helping us but we still have work to do I feel, to hold on to our marriage. I had no idea the illness and treatment and everything else that goes with it would undermine our marriage, I thought we had a strong relationship.
I love my wife dearly. I wish the best to you.

[fairyem]

Hi

I know if my husband was on here he'd be talking to you as he has to put up with this from me. I'm 31 and he's 29 and we got married when I was diagnosed ( it was planned just moved it forwards) He's away until Sunday but when he's back I'll see if he will be up to chatting.

Hang in there, I've been on tamoxifen for 18 months now and the side effects have reduced, changing brand has helped too. At least you talk about it with each other though.

As I said I'll speak to my husband and get back to you.

Em

[Guest user]

My wife has only really started on Tamoxifen after lumpectomy, lumph clearance, Chemo and rads. 100% of our marriage has been living with this (diagnosis 3 weeks before the wedding) and prior to that we were never really in the same city for more than a few days (5 years of commutes and only 5 months living in the same house)so I guess we didn't really get to grips with what our normal comfort zone was beofre this all happened. The Tamoxifen my wife is on leaves her feeling fairly flat and not particualrly interested in other activities (which I completely understand and support) and it is difficult to gauge what are her normal grumpy moments and what is the tamox as she doen't like burdening people with her problems. However, over the last couple of weeks she seems much happier and engaging, but I have noticed that her mood can change like a switch has been flicked. There doesn't appear to be the hot flushes etc yet. We are still in the process of thinking about how long she is to be on Tam as we want to try for kids and we aren't getting any younger (36). Meeting with Oncologist next week might give us a clearer picture. I want her to have the best chance possible so if that means 5 years then that should be the way ahead, although last meeting with Onc, she said that after 2 years we should revisit our family plans with an option of coming off Tamox then, but the damgers were spelled out in black and white (a warning about whether I would be prepared to be a single dad was a rude awakener!!).

Will watch out for the side effects and brand issues.

All the best to everyone

Rich

[Guest user]

Thank you so much for your comments and advice. I will ask my wife abound the brand she is taking. The lady who is helping us at Relate rocks! The sessions are really helpful.

[DaisyGirl]

bumped for Pete

[DaisyGirl]

Hi Pete

I have just started taking Tam (in 5th week) so I only have had a few weeks experience (and obviously not a male partner) but at 51 on diagnosis we had already gone through 3 yrs of pre menopause symptoms. If your partner was not pre-meno before diagnosis, this will be a very difficult time for you both.

I am not very good at giving emotional advice but on the practical side, there are 3 different brands of Tam, Wockhardt, APS (which I think has now been taken over by TEVA PHARMACEUTICALS) and one other. There are many threads on the forum regarding the side effects of the Wockhardt brand (which is most commonly dispensed as it is the cheapest) and there are significant differences in the "other ingredients". If your partner has been taking Wockhardt you might want to see if you can get your GP to change brands. I took Wockhardt for the 1st 4 weeks but now changed to APS and I have already noticed the difference.

I am going to start a new thread about this so you might want to look out for it.

It is a very difficult time for you both but you sound a strong loving couple and I am sure this will get you through.

love DaisyGirl xx

[Guest user]

Hi Sam,

I can remember having the same worries around this stage but hang in there because if the tamoxifen works you'll have some good years ahead of you . The emotional support you give your partner now may be far more important in the long run than any physical problems you are going through at the moment.

My advice from someone who went through this stage 7 years ago is enjoy every day that you have with your partner. That and be very careful at the end of the 5 years. Get ANY ache and pain tested fully and don't be fobbed off when you GP tries finds a non cancer explanation.

[Sam_BCC]

I have started this thread on behalf of new user Pete.

I would like to talk to and hear from partners of Tamoxifen users. My wife had surgery, chemo and radio 2 years ago and is now on 5 years of Tamoxifen. I wasn't prepared for the side effects she is suffering and the effect these are having on our relationship.
I am finding it difficult that she does not want to touch me, nor let me touch her. I wonder what the experience of other partners is?
We are getting tremendous help from Relate and we are determined to succeed.

Apologies is this topic appears in another thread - I did a Tamoxifen search and didn't find a similar discussion.