Continuing Treatment - pre menopause

Hi West End Girl

I am also ER+ and am on goserelin (sold under brand name zoladex - which more may recognise), I've had two pellets injected in stomach fat roll so far.
I'm 50, so a little older than you, and had my last period last March (started BC treatment beginning Sept) with hot flushes & night sweats before so thought I was post menopausal but those people at the hospital want to be sure its all behind me hence the ovary drying up injections! I think that they do this to reduce the amount of hormones in the system (as once post menopausal no hormones being produced) to give the hormone tablets ( I'll be on letrozole at some point in the not too distant future) better chance of working (but could be wrong!).

I also had very few side effects from chemo, like yourself.

Personally I've just found hot flushes and night sweats to be the main side effects which are bl00dy annoying, especially when you're struggling to sleep anyway just having your boob whipped off, but laughable and manageable for me. Not sure I've gone too mad with mood swings yet (partner may have a different take on this however) and given everything else that's going on who would know eh? If you want to know what to expect re menopause (which are the main side effects of having this), and can do so, ask yer Ma, I did and my experience is very similar.

Worth checking my logic above, especially given you're already on tamoxifen??

I see this as a very small element of treatment compared to what else we've had to endure.

Sam X

Hi , I will be having to make the same decision as you in a few months. Haven't really discussed pros and cons yet as still got more chemo,surgery,radiotherapy to go. My thoughts at the moment are to take everything to stop recurring even if small percentage.  If the side effects turn out to be really bad then I can always reconsider and stop taking the treatment and then I assume the side effects will stop? Sorry I cant offer any informed advice,just my gut instinct at the moment x

Hiya,

I had zoladex for 6 months when I was 44. I was a bit achy the day after the injection, not bad enough to take painkillers but I was aware of it. The injection itself is not very nice - I always looked the other way. I did also have some mild hot flushes but they were not unbearable. After a few months, everything did settle down. I went in then to have my ovaries out because of my age. 

I did have achy joints but I put that down to letrozole. And I am very forgetful these days but not sure if it is post treatment, letrozole or the menopause. 

After 2 and a half years on letrozole, I don't suffer from any hot flushes or aches. 

I wanted to do as much as I could do to prevent a recurrence. 

You can always try the injections for a few months, and then stop it if you suffer from bad side effects.

Cwtches,

Gay xxx

Thanks for sharing your experiences. I should know by now that they have to tell you the worst side effects and it usually sounds scarier than it turns out to be. It's good to hear you both managed with the zoladex and I agree that taking every option offered to reduce chances of recurrence seems a sensible approach.

Yorkshire_defector I was told Tamoxifen is suitable for pre or post menopause, so I can either continue on this or have the injections and then when they can see that I have gone through menopause I will change to Letrozole. I was a bit confused as to why Tamoxifen & injections if they are both turning off oestrogen?? Question for next appointment, along with..... is it better to go onto Letrozole than remain on Tamoxifen? So many decisions, it's baffling as well how we can be offered slightly different options.

xx

West End Girl

Like a lot of this cancer malarkey its all very confusing and my poor little head can only cope with so much before it feels the need to pop! 

And don't forget my boyfriends favourite, anastrozole, which is the one recently that was shown (?) to reduce the likelihood of cancer coming back.  I did ask why was this not suitable for me but can't recall why Letrazole was better!

Am interested to know what your team have to say.

Sam X

Just a thought about oestrogen. We don't only produce it from our ovaries. After the menopause, oestrogen is produced in our fat cells. As far as zoladex, I haven't had any side effects yet. I did have a few hot nights (and not in a good way!!!) while I was going through chemo as it forced my body into the menopause (sometimes this is only temporary though, hence the zoladex now, otherwise I wouldn't be able to have the letrozole). Anyway, as I'm ER+, I knew that I couldn't take anything for the menopause symptoms that contained oestrogen or plant oestrogens, so I started taking evening primrose oil and that seems to have helped. 

It really helped me to read the Nice guidelines online, as they are really informative. It seems that the Letrozole is a lot more effective overall  at preventing the cancer from returning so I have decided to go with that ( and Zolodex). I want to take all the help I can get!!! 

Hi West End Girl

I am in a similar situation to you. I’ve been reading about side effects and they can be quite bad. I’ve got three weeks to decide and wonder if you have more information now

Hi

It's funny you ask me this question now as I just had another discussion with my oncologist last week. Basically, I didn't have to decide anything at my March appointment as was advised not an ideal time to start Zoladex injections during a global pandemic(!) when face to face appointments are being reduced. So we agreed to delay for 3 months, it gave me lots of time to think of more questions.

So yes I do have more information. I had bloods measured again 2 weeks ago and am currently still pre menopause, although oestrogen level is low and FSH level is quite high (20.3) but not menopause level yet.

So as I said in my original post, I am 48 and will probably be prescribed endocrine treatment for 10 years. Currently, Tamoxifen is the right treatment being pre menopause. I have been told that the switch to aromatase inhibitors (letrozole etc), and therefore the Zoladex injections to enable this, is more beneficial to younger ladies who are further away from menopause. For me, the benefit is probably less than 2%. Another factor for me is that I had a complete pathological response to my chemo so by the time of my surgery, I had no cancer left. Apparently this also means not as much benefit for switching to Zoladex/letrozole regime.

If I decide to go for the Zoladex injections, I will be committing to visiting hospital every month to get the injection, probably for about 3-4 years. Not sure at what point you switch to Letrozole as they have to be sure ovaries have definitely stopped producing oestrogen, so probably would  remain on Tamoxifen for the time being anyway. I would also have to start on Zoledronic acid by infusion every 6 months for 2 years, to protect from bone weakening. This can also have side effects. 

I've been on Tamoxifen since February and feel absolutely fine, no real side effects to mention. So I am a bit worried about changing to something that could make me feel worse and that all the extra hospital visits and possible side effects would be a constant reminder of having cancer, rather than putting it behind me and getting on with life.. I also think that during the years having the Zoladex injections, I could feasibly start the menopause naturally. When I become post menopausal, we will have another discussion about switching to the AI drugs at that point for the remainder of my treatment.

I'm due to speak to my oncologist again in 2 weeks to make my decision. She is going to look at my predict stats just as a final indicator but I am pretty certain at this point that I am going to stick with the Tamoxifen during this pre menopause time.

Having said that, I do still feel a bit uneasy about the decision. It feels weird that, when you first get diagnosed, the oncologist takes charge and tells you what your chemo will be and how it will all work. It's reassuring, they are the experts after all. Now they want me to decide on my treatment!!! I feel a little bit guilty that maybe I am taking the easy option and turning down a better treatment being offered, albeit only marginally better. But I think I have to remember that the treatment I am on is a good option and proven and many ladies do either stick with Tamoxifen or come back to it after trying the other drugs. Yes, Tamoxifen has risks too but it is more protective of the bones and heart than the AI drugs. Hopefully, my team would give me more of a steer if they thought I was making the wrong decision, they wouldn't give me the option of sticking with the current treatment if that was the wrong choice.

Sorry if I've waffled on a bit but you can see there is a lot going on in my head. Also, obviously, remember some of this advice is specific to my personal circumstances so advice may be different for you.

Good luck with your decision. xx