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!
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.
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
I haven’t been on this forum for quite some time but just did a search about zoladex and came across your post.
I have been on zoladex and tamoxifen since autumn 2021 and the plan at the moment is to remain on zoladex until 2024.
I was diagnosed in 2020 aged 36. I had a 2 year old but had always thought I’d have more so we did end up freezing embryos before my chemo started. I had basically a year of treatment (mastectomy with reconstruction, 8 cycles of chemo, 15 cycles of radio, lymph node removal) and then started all the hormone side of things. I have side effects but I never really know what drug is responsible for them! And also what is just natural after what my body has been through, having a 4 year old and a busy job.
I get very tired yet have sleep issues, I usually wake up at least once a night and can struggle to get back off. I rarely wake up feeling ’refreshed’. I get very emotional, my go to reaction is to cry and I never used to be that sort of person. I also get very irritable over tiny things, especially when I’m tired and can get brain fog where i forget where im going mid sentence. I thought I’d dodged weight gain but the last few months it has hit me and especially tummy fat. I’ve always been slim, a size 8 for many years then gradually a size 10 but now the majority of my clothes don’t fit, despite eating a healthy diet, having a personal trainer once a week for weight training and being active and walking a lot. It’s affecting me psychologically as I don’t want to keep going up dress sizes.
I find the actual injection fine and I would say the first year I didn’t experience these symptoms as much at all but they’ve definitely increased. I try to keep focussed on the fact the treatment is hopefully preventing a recurrence.
I know I have a child but I can definitely relate to your feelings about that. Feel free to contact me sometime.x
I am really struggling with the zoladex. I’ve had to come off it twice already and I’m on my last attempt to see if I can cope with it. It gives me insomnia, night sweats, hot flushes, brain fog (I’ve never felt so stupid!), and I am so emotional. I’m worried that it is affecting my ability to lead a normal life, and really this is the last chance I’m giving it. 3 weeks in since my jab and already feeling depressed - like there’s a blanket of sadness over me. I don’t even know whether to have the next jab in a week or just call it a day. My team seem keen I should stay on it, and I don’t want to be beating myself up in future if cancer comes back and I’ve not done everything I could to keep it away, but this is getting silly with the side effects.
Anyone else struggled like this? Anyone got any tips on how to manage it? Also - badly timed going back on it as I’m currently in a phase of scanxiety waiting for my yearly MRI results… probably not helping. sigh
Hello. I hope you are well. I have just come what’s this post. I have been on letrozole and Zoledex for 6 months and am waking up every single night and also weight gain has been an issue since starting. I was always a size 8 to 10 but now 10 going onto 12 it is really depressing. I’m only 43 now and I’m a very slim person and quite active and I definitely think it’s the zoladax causing the symptoms most. I’m taking a break from the Letrozole. I am on the second week now but still waking in the night. I think it’s the zoladax that’s causing it… My children are 14 and 13 now and I need my sleep! I am thinking about maybe changing on to tamoxifen only it’s so hard to know what the right thing to do is isn’t it? Are you still on zoladax? Thanks X
So sorry you’re having a tough time Natalie. I’ve also been on zoladex (and tamoxifen)for six months and my sleep is absolutely trashed. I wake up every one or two hours drenched in sweat and then freezing cold. I’m trying lots of natural remedies as I don’t want to resort to more drugs but may revisit medical options in the new year. There is a new drug that’s FDA approved and may get approved in the UK soon I’m interested in.
What’s helping a tiny bit are really good quality bed linen, reducing anxiety so I can get back to sleep easier and chillow pillows.
If it all gets too much, my oncologist is happy for me to just take tamoxifen but I want to preserve as long as I can. The next step for me is switching to an AI with zoladex at some stage but at least I know I can scale down from there if I can’t tolerate that combo.
I’ve not put on weight yet but scared it’s coming!
Thank you for the tips I will try those! . I think I am going to try Tamoxofen in a couples of weeks only and see how I tolerate that. I feel it’s just been too much medication at once for my body’s to take and cope with! We all have to find what works for us and seen as though it’s for many long years out has to be right!
I hope you get your medication sorted too and your symptoms improve. I am talking supplements too and find sage helps with the hot flushes.
. I think I am going to try Tamoxofen in a couples of weeks only and see how I tolerate that. I feel it’s just been too much medication at once for my body’s to take and cope with! We all have to find what works for us and seen as though it’s for many long years out has to be right!