ER+, secondaries and periods

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ER+, secondaries and periods

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ER+, secondaries and periods I’m interested in the experiences of any other premenopausal ladies who are ER+.

I’ll try to keep this brief because it’s cross-posted - more details on the Other Site if you want to read it there.

I’m 40, premenopausal, ER+ and I’ve got secondaries. I had Taxotere last year and now I’m on Tamoxifen, pamidronate and herceptin. Six different doctors all told me my periods would probably stop, but if they came back I should have the injection (goserelin) to make them stop because it’s very bad for me to have oestrogen in my system.

Now I’ve had a period so went to clinic I saw a SEVENTH doctor who contradicts all the others and says it doesn’t matter. He didn’t even understand what the point was of giving me tamoxifen! Thank goodness I saw other doctors who prescribed Tamoxifen back in January otherwise I would have absolutely nothing to control oestrogen.

I’m going to make an appointment to talk to my BCN because I’m not happy about this, and I’m not happy about this doctor’s approach - I thought he was flippant and unprofessional even before we started discussing my case.

Any thoughts?

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Hi there, I’m pre-meno with bone secondaries. I have a jab (Prostap) every 4 weeks which keeps me in a chemically induced menopause.
I think, in your shoes, I wouldn’t want to start having periods again.
All the range of aromatase treatments, which can be very effective in the treatment of secondaries, will only work if you’re menopausal so if you are still having periods you’re missing out on several treatment options.
Very Best Wishes.

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I agree with Belinda, I don’t have prostap but have zoladex which works in the same way - I have also recently been advised to have my ovaries removed.

I would want everything done to decrease the hormones in my body too.

I hope you get it sorted without too much hassle.

Love Twinkle xoxo

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Hi
I’m the same as Twinkle, I take zoladex to knock back the ovaries so that my arimidex works.
Good luck in getting things sorted.

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Thanks for the replies everyone. Now I know that other women DO get injection and it’s not just something I imagined! I’m going to see my BCN on Monday and hopefully we can sort something out.

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twinkle can i ask why onc advised you to have your ovaries out if on zoladex,as i was also thinking about this last year , but decided to stay on zoladex, as suppose to have same effect.
sophie

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Hi silverlady

I’m 28 and premenopausal, would def. recommend you have zoladex or another hormone suppressant. I was on zoladex for 2 years with bone mets and had only a small amount of tumour growth.

x

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Hi Sophie,

I would stop the zoladex if I had my ovaries out. I am strongly ER+ and he thinks I should have them removed as we would then know in all certainty that my ovaries couldn’t produce ER. My fat cells would still be able to produce ER but I will shortly start aromasin to stop that.

He doesn’t think it’s a good idea for me to be indefinitely on zoladex as, in my case, it might not be enough. So rather than continually test me for ER he would prefer my ovaries are gone. I next see him on Tue so may find out more.

Love Twinkle xoxo