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.
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.
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.
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.
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.
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.
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.
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…
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.
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.
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.
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!
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.
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…
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.
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.
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.
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
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 ?