Tamoxifen and Zoladex

[Lulu41]

Thanks so much for your reassuring reply. My mum had HTR so hard to compare but she mainly reported hot flushes and said my grandma went through the same and would just stick her head out the window! I’m so scared about the insomnia, weight gain, loss of libido, dry vagina and mood swings. I know not everyone suffers with all these symptoms. The fear is intense tho! Finding it hard not to spin out and psychologically- the fact that two months ago I was trying for a baby and now I’m facing menopause feels like insurmountable grief… I appreciate you can connect with this feeling ❤️

[Lulu41]

Thanks so much for your reply. We have made the heartbreaking decision not to do IVF - the odds of it working are just too low for us to have that hanging over us for two years.

I am definitely going to take zoladex and tamoxifen and was pleased to hear you’ve found it manageable. There are so many horror stories and I cannot shake the anxiety I have around taking it. It’s so hard to stay positive when so many on here report a serious decline in quality of life. 😔

Desperately seeking more stories from women who have found it ok. They are hard to find! 

[Pollyann]

Hello ChattersJ,

Happy to answer your question. 😊

I ended up switching to the AI (exemestane) about 6 months after starting on zoladex. It would have been a month or two earlier except I had holidays planned and I didn’t want to switch tablets in the middle of it.  It wasn’t so much a case of needing a particular amount of time on tamoxifen before switching, it was more a case of waiting to see if I could tolerate/adjust to the zoladex before intensifying the hormone therapy by switching to an AI which the onc said would be a bit more beneficial to me than tamoxifen.  He did say if I couldn’t tolerate the changes at any stage we could always go back to tamoxifen.  At least that’s how it was explained to me, anyway!

Happy to answer any other questions if you have them.  

Pollyann. 

[ChattersJ]

Hi Pollyann 

I read your reply with interest… I’ve been on tamoxifen for 3 months and have my first zoladex injection next week. Do you mind me asking at what point your oncologist switched you to an AI? I’ve found tamoxifen ok so far but I think I’ll be switching to an AI at some stage and it makes me nervous! 
Thank you x 

[Pollyann]

Hi @Lulu41 

I am taking an AI plus zoladex, but previously I was taking tamoxifen plus zoladex. I did have menopausal symptoms with the tamoxifen + zoladex combo, but actually, it was quite manageable in general. I get slightly more intense symptoms with the AI now, but it’s all still do-able. 

Also, I know you weren’t asking for advice on the egg retrieval, so I hope I’m not writing out of turn, but I was in a  similar position  to you pre-treatment ie. aged 40 and told I had not much chance of egg harvesting working. For various reasons I decided not to go through with it prior to starting chemo. That’s my one regret, the ‘what if’ I had done it and it had by some miracle been successful.   Chances are it wouldn’t have been but having given it a go would have given me peace of mind, since the chemo decimated my fertility. 

This might not be a factor in your decision as you may not be in need of chemo and you have already frozen eggs before so I can understand that you might not want to go through the ordeal all over again, physically and emotionally.  But maybe worth considering how you’ll feel in a couple of years if you don’t give it a go. 

Hope it’s ok to share that with you, and wishing you all the best as I know how hard these decisions are x

[Kay0987]

I am sorry you are being faced with these kinds of decisions. I struggled with infertility and it was such a horrible time but that was way before my breast cancer diagnosis. Going through both at the same time I know must feel insurmountable at times. Perhaps I can put your mind at rest in regards to endocrine therapy though. I am in my late 40's and am on the ovarian suppressor, lupron and the AI, letrozole. No huge side effects beyond the mild menopausal ones. One way you can kind of get an idea of how you'll do is if you know how well your mom tolerated the physical symptoms of menopause. My mom had a lot of emotional issues but hardly any physical. I seem to have followed suit and luckily an anti-depressant works very well for me.

[Lulu41]

Hiya

I’m 41 and was diagnosed on 7th Feb with stage 1 grade 2 bilateral invasive ductal - hormone positive - lymph node negative. (That’s a lot of words I didn’t know a couple of months ago!)

I’ve had lumpectomies and will find out if I need chemo tomorrow after oncotype dx results. I will definitely have 15 fractions of radiotherapy and hormone treatment.

Initially I thought it would be five years of tamoxifen but my oncologist has said that she would like to give me a boost with zoladex injections if I decide now that I will take a break in two years to try to have a baby.

I’m devastated at the thought of not having kids (I have none) and I’m also anxious about of taking zoladex for two years because of potential side affects. 

My partner and I need to decide quite quickly but it feels like a hard decision to make for our future selves. 

We also need to decide is we will do a round of IVF to try to get embryos before any treatment starts - that’s another impossible decision to make. Been told odds of it working are so low. 😔 We had an unsuccessful attempt last year with fresh and frozen eggs. 

Has anyone been prescribed both drugs - tamoxifen and zoladex - and actually found it tolerable?

Any help/sympathy appreciated. I had no idea that breast cancer had all this hormone related fall out and can force you to face so many other fears/feelings or loss I such a short space of time!

Lx