Just wondering how many young women on here are not on Zolodex in conjunction with Tamoxifen. My onc doesn’t believe there’s any benefit to it - but i kept pushing him as it seems that so many ladies on here are on Zolodex and he told me he was happy to prescribe it. The decision is now down to me. I’d much rather not take it if the benefit is minimal as, a couple of months after treatment, I’m back to feeling like ME again, have lots to look forward to, and, am worried about my quality of life being affected and feeling rubbish.
Having said that, if there’s a definite prognosis benefit then I’m happy to feel a bit rubbish but my onc says there isn’t. I do trust and believe him most of the time…but why would other oncs prescribe it if there was no benefit…?! They wouldn’t!!
will definitely be interested in responses to this. like you say there seems to be women on both and other just on tamoxifen.
i havent seen on yet, but this one question i am asking about. i have already mentioned to my bcn and surgeon and they have said to discuss it with onc. bcn has suggested maybe waiting to see if my periods stop first with tamoxifen.
Why don’t you ask for a second opinion? You are entitled to it, and it will help you to make up your mind from a position of greater understanding. Whatever you do, you have to be happy with the treatment, as there are side-effects from everything we take.
I think some people take Zoladex plus an aromatase inhibitor rather than Tam, but I could be wrong.
Hi, I’m on tamoxifen and asked why I wasn’t also on zoladex the answer I got was that not all oestrogen is bad and at 41 I need it also that because my bc was er+ then tamoxifen should do the trick. Xx
this is the nice guidance on zoladex (ovarian suppression).
Ovarian suppression/ablation for early invasive breast cancer
1.7.1 Do not offer adjuvant ovarian ablation/suppression to premenopausal women with ER-positive early invasive breast cancer who are being treated with tamoxifen and, if indicated, chemotherapy.
1.7.2 Offer adjuvant ovarian ablation/suppression in addition to tamoxifen to premenopausal women with ER-positive early invasive breast cancer who have been offered chemotherapy but have chosen not to have it.
I was initially prescribed Tamoxifen on its own, but due to side effects I am now on Zoledex & Arimidex - my periods didn’t come back after chemo (I started Tam straight after) - so my onc said there was no need for zoledex - as soon as I took a break from Tamoxifen my periods returned so then I was prescribed zoledex - i’ve never really worked out who does and who doesn’t get it!
I was on zoladex during chemo and then changed to tamoxifen after. My onc told me there was no benefit to being on both. I would be interested to see if others have been told the same. X
I’m on both. Initially was just on tamoxifen which I started after chemo finished, but because I was still having periods and lots of them, my onc wanted me to have zoladex as well. Setting her next month to assess how i’m doing. Ideally I’d like neither as I hate the side effects but I don’t suppose that’s an option. So also on anti-depressants and trying cod liver oil capsules to see if that helps my 70-year old joints (since i’m only 36). Think tamoxifen alone should be enough but as the others say you could try getting a second opinion or trying zoladex to see how you get on with it. Al x
I’ve actually had 2 second opinions (!) up in Harley St. One said to have Zoladex alongside Tamoxifen (but the second and third opinions were after my initial diagnosis so I was more interested in the immediate treatment so didn’t push him on why and what the benefit was). The other said there were some studies that showed a benefit and some that showed no benefit so it’s a bit up in the air.
I’m just worried as the decision is now in my hands and I want to throw everything at it - but, as I am lucky and have no side effects from Tamoxifen, my hot flushes have almost stopped (it had got to the point on TAX where I was embarrassed to go out as my hot flushes were so bad - I literally went bright red and dripped with sweat! Yuck!) and I am happily ticking along now and don’t want to add unpleasant SEs into the mix unless they are necessary. Am also just starting to shift some of the chemo weight gain.
It does seem as though onc’s opinions are completely split on this one. Thanks for the NICE guidelines Lulu. It’s quite interesting isn’t it!!
Al - am tempted to see how I get on with Zolodex…just struggling to find a gap in my diary when I don’t mind risking hot flushes etc.
I’m on Zoladex and Tamoxifen, for exactly the reasons Lulu described when she quoted from the NICE guidelines. I was offered chemo since AdjuvantOnline put me in a “grey” area on whether I needed chemo or not, I turned down the chemo since I thought it would be over-treatment, so was offered the Z+T combination.
My later reading around on the subject revealed that Z+T is considered equivalent in survival terms to the earlier generation of chemo, but not quite as good as the latest.
My SEs from Z+T haven’t been too bad after the first few months of night sweats, now reduced to waking up feeling too warm once or twice per night. But then I was 50 at diagnosis and probably well on the way into menopause already. The younger women seem to suffer more SEs, probably because their oestrogen drops off a cliff edge from a high level.
I am premenopausal, have had everything thrown at me so far, 8 chemo’s evry 2 weeks, surgery, rads and Tamoxifen. I have been having my treatment in Harley Street and at no time has my onc suggested Zolodex or anything similar.
My periods stopped during chemo and haven’t returned but have been told by my onc that she plans to keep me on Tam for 18 months-2 years and then an AI.
Mind you, at the moment am having a break form Tam as well on the suggestion of my onc today as the side effects were horrendous. She wants me to get over the Herceptin (her words and suggestion) and then start again with the Tam.
Am working on the basis that she wouldn’t be putting my long term survival at risk unnecessarily.
My oncologist was very clear. I am 38. He said i should go on Tamoxifen and if my periods returned in the first 2 years I should contact him to start zoladex as well. I understand that the side effects of zoladex are worse than tamoxifen so I wasnt keen to take it.
My period returned this morning 18 months since chemo! I was convinced the chemo had given me a menopause so its a bit of a surprise.
I was pre-menopausal and my periods came back quite soon after finishing treatment (I was 31 at diagnosis 9 years ago, 32 by the time I finished), but was only prescribed Tamox. I took it for around 2 1/2 years before being diagnosed with a recurrence. It was only then that my onc talked about shutting down my ovaries, so that I could switch to an AI. Who knows whether I would have had the recurrence if I’d had Zoladex as well? I suspect I would have, as even though I had an oopherectomy at my first recurrence, I’ve still gone on to have a second recurrence… Remember that my case is quite extreme, though - I really don’t want to panic or frighten you, as most women will not go on to have any recurrence, of course, even if they were pre-menopausal at initial dx.
Good luck with your decision and tx, Angelfalls xx
This is a subject close to my heart… and I don’t have the answer either.
36 when diagnosed October 2010, had bilateral mx Dec 2010, put on Tamoxifen, no chemo (didn’t meet the thresholds) or rads - onc offered me the option of Zoladex saying that there was a possible benefit to it as it could enhance the effect of Tamoxifen, but that she thought it was entirely reasonable for me not to take the Zx. Since taking the Tam felt like a really big deal for me already and I was very apprehensive about it, I decided not to take the Zx. Since I was never on chemo my periods were regular throughout treatment.
6 months later and a new primary June 2011. Further mx to take away more skin and removal of the recon and rads. Now on Zoladex and Letrozole on the basis that I fall within the small percentage of women on whom Tamoxifen is not effective.
Who knows what might have happened if I had decided to take the Zx first time round? Perhaps the oestrogen suppression would have been sufficient to prevent any further cancers. Or perhaps a tiny cancer was left in the skin at the first mx, and nothing would have made any difference. I have tried very hard not to get lost in the what ifs and the recriminations and regrets about the choices I made. Along the way I found out I am BRCA1 positive. I am due to have an oophorectomy in the spring
Taking the Zoladex has really been ok in terms of side effects as far as I am aware. I can’t remember that well anymore how I felt before breast cancer became such a major part of my life. So when I feel down and tired that could be the drug or it could be just life. I haven’t really suffered at all from hot flushes but I do get joint aches especially in my hands - but those may be down to the Letrozole rather than the Zx.
The drs said I would feel the full effects of Zx after 3 months. Of course the effects are reversible - so if your drs think there are some advantages to taking the Zx and you are in 2 minds, you could always give it a go and see how you get on.
Been reading the posts here. I finished two years of zoladex last June. I have been on and still am on tamoxifen.
This morning I have had some bleeding and am really freaked out!
Can your periods come back even though you are still on tamoxifen? My onc told me when I last saw them and was questioning if my periods would return that she would not expect so.
yvetteh - I just read a post in the chemo Nov thread where Lulu was saying not every woman’s period stops while on Tamoxifen. So please don’t panic. I have no personal experience of this, not started Tam yet, had a bleed after foruth chemo just the other week, am 42.
Just having a reply has made me feel a little better. Thank you!
It was a really big shock this morning and like I said, really unexpected as well after what my onc told me. Basically she said that the zoladex had zeroed my hormones and the tamoxifen acts to keep it that way after finishing zoladex as the baseline from the zoladex is very low. The hormone levels should not pick up again because of the tamox.
Sending you a big hug for responding so very quickly.
I have tried to see if anyone else has had any experiences on this in the discussion groups and really could not find out much information.
I have been on Tamoxifen since August and my periods havent stopped, I was hoping that they would really as I have had 6 years on the pill and they did stop during this. Oh well, my onc said that as I am 45 I am at an age where they could stop or not, heres to wishing they still could
I still had periods on tamoxifen too. And also after my first zoladex injection. But nothing since second injection, replaced by raging hot flushes and joint pain. Ah, the joys! So nothing for you to worry about I don’t think.