I have posted on some different threads but am wondering if anyone has had experience of Zoladex particularly if they haven’t had chemo . I am 42 and got my Oncotype back on Thursday and was told it is 17 so intermediate. There was a distant recurrence score of 5% over 9 years. I am not sure how this is worked out. Prior to this I had had thought more score would be lower My oncologist is strongly of the opinion that there chemotherapy is not the right way forward- she hasn’t really considered it. However, following a question in an email she has said that depending on how I get on with Tamoxifen ( which I have juststarted) we may discuss ovarian suppression which she says may have a small benefit. I was wondering how people have found Zolodex (it sounds very scary). It would be great to hear from any premenopausal ladies who had an intermediate Oncotype.
Hey @eb13,
Hope you are doing well - I can’t comment on the intermediate oncotype score as I didn’t have that test, I was recommended chemo straight away based on being grade 3 and my age.
I was started on Zoladex at the beginning of chemo and since finishing I have begun exemestane in addition to the monthly Zoladex. In the first few months I found my main symptoms were hot flushes during the night (acupuncture has helped to settle these to now just 2-3 a day), achey joints when I wake up and if I’m inactive during the day and perhaps some brain fog (but that could be from the chemo!). I’ve found these side effects manageable. It seems everyone reacts pretty differently to Zoladex.
It’s interesting your oncologist has suggested tamoxifen and Zoladex, I get a lot of information from breast cancer.org and they posted an easy to understand breakdown of a study comparing Zoladex + tamoxifen to just tamoxifen alone: Tamoxifen and Zoladex Offer Same Recurrence Risk Reduction
It shows no significant difference in recurrence. Perhaps your oncologist has newer information?
Thank you so so much for your reply. I have been thinking about this a lot today and I don’t really have anyone to talk too ( my husband is great in so many ways but not at discussing treatment stuff- he thinks we shouldn’t look into it beyond meeting the consultants) . It really helps to hear that the side effects have been manageable for you. I hope your treatment continues to go well.
I am on ovarian suppression and an AI. For people with intermediate to high oncotype scores it has better recurrence rates. Personally I’m fine. I like menopause myself. No more of those infernal highs and lows that come with estrogen swings. I haven’t noticed any particular horrible side effects either. Some stiffness but that can be alleviated with stretching and exercise. I’ve done so well that they are going to remove my ovaries in a few months so I can be done with the ovarian suppression drugs at least 
Thanks this is really good to know as well. I had been fully preparing myself for Tamoxifen. It’s good to hear some positive stories
What did your oncologist base the decision on?
If this question was for me, EB, they didn’t make the decision. I did. They offered me both tamoxifen or ovarian suppression with an AI. I chose ovarian suppression because it gave me a slight advantage recurrence wise and my oncologist was fine with my decision.
Similarly to @Kay0987 , my oncologist offered me both options and I opted for Zoladex and an AI as it slightly improves recurrence free survival odds and also I have a history of endometriosis and tamoxifen was likely to exacerbate my endo symptoms
Thanks so much for your comments. I find it so helpful. I am not sure whether my oncologist will want me to go on Zoladex. When I brought it up she said we could discuss it at my next appointment. All she added is that there may be small benefit but not without side effects.
The bones are the biggie. More than likely you’ll have bone loss. There is medicine to help mitigate it but then there can be side effects to that medication, too. It’s a never ending dilemma unfortunately. For me, because of my age at 48, I figured I was close to menopause anyway so to end my estrogen at that point wouldn’t be all that much different for me health wise. It did appear to affect my bones but I am on an infusion for bone mass growth which also has the added benefit of lowering my recurrence score even a bit more. No huge side effects from that to speak but we’ll just have to wait and see what the future holds. If I have to adjust something at some point I will. I got over my fear of medication with chemo and then also seeing how my obese, diabetic father has managed to survive to 81 (he did many things wrong but when he was prescribed something he took it. Lesson learned for me).
Hi
I am 51 and my surgeon classed me as somewhere in the middle as not sure if menopausal as I had contraceptive implant prior to diagnosis.
I had ER and PR positive breast cancer which was Grade 3. My oncotype score was 18 for one tumour and 16 for the other. Was told no benefit in having chemotherapy. I was started on AI at diagnosis and also Zoladex. After the oncotype testing, was advised to have Zometa (bisphosphonate) as can reduce risk of returning in the bones and also helps increase bone density which as others have said can happen with AIs/Zoladex.
So far so good, first few months no real issues other than brain fog (my immediate memory is shocking!) and all manageable. After about 4 or 5 months starting getting joint pain, mostly in my hands/wrists, but mostly just first thing and manageable. Getting out for a walk each day helps general stiffness. All manageable, just letting you know as I was surprised to have ‘delayed effects’.
My first Zometa infusion (will have 6 every 24 weeks) was fine, but achey/snuffly for 48 hrs but that was it. The side effects sound quite scary but most rare, so I decided to go for it. I like the fact I have another thing to ‘hit’ it with and minimise recurrence. 
Good luck and all the best.
Thanks for your replies. I am not sure my oncologist will want me to go on Zoladex as she mentioned that there could be a lot of side effects for a small benefit. However it’s interesting that your Oncotype us similar and you are on it.
It’s good to hear your side effects aren’t that bad. I am concerned that mine would be a bit worse because I am 42 and still premenopausal.
I’ve no idea on my recurrence percentage or anything else that others talk about, I just was offered the injection on top of tamoxifen and told it was just another tool to stop it coming back. I was probably peri before chemo anyway. I am on everything they’ve offered me. I’m currently not really suffering any side effects of the hormone treatment, the odd hot flush but nothing to write home about. The only thing I wasn’t told about the injections is how painful they can be. I now use numbing cream and it works a treat! Also due to having the injection they class me as post menopausal so am also on zometa to stop anything getting in my bones. The cancer was in my lymph nodes, so doing all I can to try and stop it latching on elsewhere.
Thanks for replying. Can I ask how old you are? I am pretty sure I am premenopausal. Thanks for the tip about the numbing cream - I will definitely get some if I have to have the vaccinations. Does everyone have Zometa with Zoladex? It is like a while new world!!
I was told zometa was offered to everyone who is post menopausal, you can’t have it before menopause. The zoladex/goserelin injection freezes the ovaries and is given in the stomach. I’ll be 46 later this month x
So are you then considered post menopausal if you have Zoladex? Thanks so much for your responses. I hope you continue bti get on well with the medication. We are quite similar in age. It sounds ridiculous but I find it helpful to hear from people in the same age group.
Yes, and after just one injection! They didn’t explain that to me very well. No it’s good to hear from other people in our age range. A lot of stuff does seem geared towards retired people and I find that frustrating. I don’t go to any support groups or therapies as when I’m not working I just want to chill at home. Glad I found these forums as can browse through them at my leisure and they can be very informative too.