Hi everyone - just looking for a bit of support here.
I was diagnosed last year, had a lumpectomy followed by radiotherapy and hormone treatment. I was put on Anastrazole as, following four lots of blood tests, they said I was post menopausal. I’m 54 and haven’t had a period for years due to having the Mirena coil, which I had removed when I was diagnosed back in the autumn.
All went well until I had sudden bleeding last month which I got in touch with my oncologist about. He referred me for an ultrasound and then I had a hysteroscopy and biopsy, and during all this I had another episode of bleeding. All suspiciously period-like and luckily nothing abnormal was found during the biopsy etc so they are now saying I am actually NOT post-menopausal and I have to have Zoladex injections or else have my ovaries removed.
On top of everything else this has really upset me. It just feels like it’s never ending and I am dreading the side effects off these injections. I had to really psych myself up to take the Anastrazole in the first place and now it feels like I am there all over again and I have just wasted my time for the last six months taking the Anastrazole when it’s not been doing any good.
I really feel tempted to say no to these injections but I’ve said I will try the first one and see what happens.
I would really love any support and/or experiences with taking Zoladex especially people around my age x
Hi, I’m younger (in my late thirties) and 1+ month into Zoladex.
I am currently undergoing chemo and taking no other meds.
The hot flashes came on just before my second injection. They are annoying, but not intolerable (yet). I was prescribed clonidine hydrochloride by a naturopathic GP today, and have looked into black cohosh as an all-natural alternative.
Most concerningly I’m having “black moods” every morning. Again, I am planning to use a natural antidepressant alternative (Gaba with B3 for absorption).
With both the medication and supplement, I will check with my oncologist before taking them.
However, I plan to come off Zoladex once chemo is finished and I will insist on starting with Tamoxifen (I doubt anyone will be happy with that decision, including my firm decision to not take AIs at any point).
You are already on Anastrazole. Ultimately, you don’t have to add Zoladex or remove your ovaries if you don’t want to. As Zoladex is a monthly injection, you could try it and see how you fare if you are wavering. After 2 doses you will probably get an idea of what it’ll be like.
Removing your ovaries is a more drastic approach, from which there is no going back. So I would probably go for Zoladex as a trial, or if you feel Anastrazole is enough to be dealing with, I don’t think anyone should begrudge you. You definitely don’t ‘have’ to do it.
I’ve been on Zoladex for 6 months, started with monthly injections then moved to 3 month option. Also I take Exemestane, and Zoledronic Acid for bones. Prior to that I was on Tamoxifen for a few month, but Dr thought it best to change. Hot flushes a few times late evening and a few niggles which I pass off as hormone related, but none serious.
The last 1-2 months have been a little more challenging, more hot flushes and headaches. Some of my liver bloods went extremely high. I initially thought it must be Zoladex or Exemestane. After a few more tests, I have gallstones. So the extra symptoms may be a result of that.
Between Zoladex and Exemestane you are pushed into any immediate menopause. Both showed their effects quickly as they take little time to start making “changes”. Whether it happens naturally or medically, menopause can be unpleasant for many. For those with ER+ it’s effective, but unfortunately no HRT to help with the transition.
As the previous post mentions, you can try Zoladex it’s not permanent. The injection is quick. Ask for some “freeze” spray to numb the area, it has a slight kick to it - but it only lasts a few seconds. I had a small bleed within the first 2 weeks, which they say can happen.
If the need arose to stop Zoladex I would opt for ovary removal. I’m 50 with polycystic ovaries, and being ER 8/8 I would be happy for them gone!
Hello there! You sound like you are going through the mill. I am 53 next month and have been on Zoladex for about 18 months, using it alongside Ribo, Letrazole and Xgeva. I haven’t found Zoladex too bad, started monthly then 3 monthly. Jabs are slightly sharp but not awful. Sweats etc are there but perfectly liveable. I am on so many other meds that I don’t really know which one causes what! Letrazole also has side effects!! And Ribo. But all in all I manage life perfectly well, active and busy, and just take a moment when necessary. I think use of the drugs basically depends on what you are prepared to put up with. Yes there are side effects, but if the drugs work and enables us to live life then a bit of discomfort is worth it!! My SMBC is currently stable, having had primary BC 5 years ago and being on Tamoxifen, until my SMBC diagnosis 18 months ago. This combo seems to work for now, and without the Zoladex I wouldn’t be treated, so if it was me, I would just go for the monthly jab and see how you get on. The benefits are worth it and it is honestly ok. If you are happy then definitely go for the 3 month one after a little while, as it is much less intrusive time wise. A month passes in a flash! Hope this helps. Good luck with it all! Xx
Hi, I am 52 and I have been having Zoladex injections for the last year, alongside Letrozole. The jab is slightly uncomfortable and I have found it depends on how skilled the nurse is at administering the jab, as to the level of discomfort. I now ask for a particular nurse when I make the appointment . I am on 4 week injections. I experienced quite extreme hot flushes at first for a month or two but that has settled. Still get them but not as often or intense as they were at the beginning. I have some slight pain in my joints; thumbs, right wrist and left elbow in particular but nothing unmanageable. I am able to get on with everything I did before BC but I rest when I need to now, rather than pushing through. I want to look after my body as best I can. My oncologist advised start with the injections and if all goes fine and my body can tolerate it, then we could look at getting the ovaries removed, which would be my preference. Until then though, I am happy to get the injections. Hope this helps a wee bit
Thank you all, really good to hear your experiences and it’s really helped to have some replies from people in the same boat.
@cathut my plan was to come off the Zoladex as soon as I’m post menopausal (got to be soon!) but then the ovary removal thing was thrown into the mix with the benefit of not getting ovarian cancer. So a whole other thing to think about. The problem is, if I don’t take the Zoladex then the Anastrazole doesn’t work properly so I don’t have any protection against it coming back. Whether or not that is a risk worth taking depends I guess on the side effects. It’s all such a minefield and difficult choices everywhere. Really hope you can get somethign to help with the black moods.
@sal1 sorry to hear about the gallstones - it is SO difficult to know what symptoms are down to what. I do hope things get better soon. Interesting what you say about the ovary removal - I wasn’t aware of there being a higher risk but I was ER8/8 too and the oncologist just dropped the removal option into conversation with the benefit of not getting ovarian cancer.
@catherinep64 really glad you are managing alright - like you, without the Zoladex I can’t have hormonal treatment as I can’t have tamoxifen. So it’s this or nothing. I’m giving it a go but I must admit I’m dreading it and being suddenly plunged into a hell of menopausal side effects. Hopefully it’ll be a bit easier than that!
@ngt I will try and find a good nurse and stick with her! Glad things haven’t been too bad for you. Are you wanting to get your ovaries removed because of future cancer risk? I can definitely see that being an attraction for me but it’s just balancing up whether or not it’s better from other points of view. I hate these decisions and so many of them have come along with this breast cancer and you never know if you’re doing the right thing.
@arewethereyet Yes, I would prefer to have the ovaries removed to prevent ovarian cancer. I think lobular cancers have a slightly higher risk of ovarian cancer in comparison to ductal (although I may be mistaken in that) and I was ER 7/8, so quite high as well. Also I would prefer to not have to work around the 4 weekly injections. I have to plan holidays etc around them and it’s just another reminder that I would prefer not to have to deal with every 4 weeks. I will need to get back in touch with the breast team/oncology and see what they say. I know what you mean about all the decisions, I was surprised at how many I had to make and found it really difficult. I found myself down many rabbit holes trying to research the options
@arewethereyet
Hi, just a quick one to tell u to ask for Prostap injections, they are the 3 monthly version of Zoladex and a tiny needle is used so less painful (you’ll have to ask your oncologist to change your prescription for this but it’s worth it). U will probs get hot flushes and weight gain but neither is unbearable. I’ve actually lost weight but it’s been a real battle!!
Hope this helps, take care xxx