Is there anyone with little side effects for zoladex and A.I ? I only hear terrible things

Hi Heab00 , thank you. I am being advised to start with the zolodex first for some reason. My main concern is I have always had very bad PMS mood swings my whole life due to the drop in estrogen at that time of month, and wondering how I will go with mood swings , not a nice thought for my partner !  How did you go with the AI side effects? 

I'm on AI for 10 years and oestrogen levels remained too high. I had zolodex for 3 months out of 24 then decided on ovary (and Fallopian tube) removal. After multiple surgeries, chemo, 30x rads it was the zolodex injections that I really hated. My decision was based on avoiding a monthly GP visit to remind me I'd had BC.... the time off work, the expense and the yuk injection! I'm so happy with my decision. My laparoscopic procedure was a straight forward, overnight stay. I'd read yuk things about preparation and the procedure, but it was literally a last minute pee before going under and subsequent 3 small incisions. I was fortunate that my breast surgeon is also a general surgeon with extensive experience in this procedure, so no need to be referrred to a new specialist and different surgical environment. I was mindful to be up and walking around as upright as I could during recovery.  I had minimal discomfort in my abdomen from the gas (people had warned me about the "agony" but I never experienced that). 20 days later I was on a plane to Bali, swimming and walking kms daily. The menopause side affects are very similar for both ... maybe I'm experiencing more sweat during hot flushes following surgery? So, no more monthly appointment for that gross injection!

Hi @TaniaB. I was on Zoladex for 5yrs after developing a new tumour because I developed a resistance to tamoxifen in 2009.( My first BC was in 2005.) I had menopause symptoms - hot flushes, sleep issues etc. They were manageable if not annoying. They did get me down sometimes but I accepted if that's what I had to put up with to save my life, I would live with it. Side effects were about the same as tamoxifen I think. Some days worse than others. After my 5yrs on Zoladex finished, I couldn't bare the thought of my ovaries starting up again so I had a full hysterectomy including ovaries, in 2016, aged 49. I can't say I have noticed any difference between Zoladex and ovary removal, although because I progressed from one to the other it was probably just a continuation of menopausal symptoms. The one thing my Onc did tell me in 2009 was to try Zoladex to see what the menopausal stuff was like and I could choose ovary removal later. However if I had ovary removal straight up and the menopausal side-effects were really difficult, there was no going back. Maybe that could be a solution for you. It doesn't have to be either/ or, but see what going into menopause is like for you via Zoladex, and then you can choose the ovary option if you want.

I have had depression that pre-dates my BC in 2005 and I have struggled with that a lot. But whether it was the Zoladex or the whole shitty circumstances of BC that exacerbated it - or both - I couldn't say. But I would say to be watchful of mood issues. Whether it is the Zoladex or the stress of BC doesn't really matter - you may need support and understanding to guide you through. Whether that is friends or a counsellor/professional support, seek and accept whatever help you need to make the road easier.

I don't have any experience with Ai so I can't provide any advice there. There are no right answers, just what's right for you. I wish you well with your surgery and decision. Take good care of yourself.

I would also advise staying off US forums. Their healthcare system is so different to ours. I found the American stories to be wildly varying with far more extremes. Stick to the Australian sites and the UK ones. Anything from Macmillan Cancer Support (British) I find to be 'safe'. K xox

Thank you so much ladies for sharing your experience and your advise and support , it it so much better hearing about this way , yes DR Google has to go ! Hearing so many terrible thing like severe mood swings, hair loss, and feeling like an 80 year old extreme pain  and depression , by most compared to hearing this type of experience helps a lot . I Have heard it is worse when ovaries removed also . Bless you love and light xo

I'm not on Letrozole (yet) but someone I know is. For her the joint pain was very difficult at first and she got some unfortunate side effects but once the dose was tweaked, everything has settled down.

Hi Tania. I am six weeks into taking the AI Letrozole. I have had a handful of side effects but none that I would classify as life ruining at this stage. I am having constant ankle pain which is wearing and annoying. It varies with severity and as yet I've been unable to work out if there's a reason for that or not. I'm conducting my personal case study on whether supplements help. But mostly I'm just hoping that I'll be one of the people for whom the side effects settle down at the six month mark.

Don't Dr Google if you can help it, no good will come of it! Take some deep breaths and remember we're all different and all react differently to the same drugs. You can always take 'holidays' from them, or try different varieties. I went to a Reclaim Your Curves lunch yesterday and the group of 10 women there swapped war stories. Well half the women there were on Letrozole. Some had no problems, some had a few and only one woman had had to stop taking it. She's now on something else which is giving her no problems at all!

I've thrown the kitchen sink at my BC and I'm not stopping now! I'm going to grit my teeth and keep going for the time being. Remember the pulse is the thing. You must do what's right for you but try not to cross bridges until you come to them. Stay in touch and let us know how you get on. Big hug, K xox

Hi @TaniaB, I'm on zoladex and arimadex. So far I'm doing ok on both. I been on zoladex since February last year when I was diagnosed. Arimadex since December after chemo and radiation finished. I'm 44 and was pre  menopausal before treatment. Chemo really made hot flushes severe but mostly that has settled. I do have stiff joints from both drugs but overall very manageable. I was scared stiff at the thought of all the side effects thanks to Google lol. Some people have little effects and others have more. I guess the benefits of having ovaries out is no mucking around with monthly injections. Unfortunately there is no way to tell if you'll have side effects other than to wait and see. You may be lucky and have no problems. I hope that is the case for you. ☺