Hello everyone,
I had a bilateral mx in December last year (one side preventative, the other to deal with the cancer) and was put on Tamoxifen. The Tamoxifen didn’t work and I have been diagnosed with a new hormone-receptive primary 6 months after the bilateral mx… I got on ok, sort of, with the Tamoxifen. Occasionally a bit hot but nothing problematic. Now I face further surgery in August for the second primary.
Looking ahead, the doctors have said that they want to put me on Zoladex and Arimidex after surgery. I am 37 and pre-menopausal. I am BRCA1 positive and was considering having oophorectomy anyway once I had reached 40, although it felt like a very difficult decision. I would be very interested to hear:
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how other pre-menopausal women have got on with this combination, and how were the side-effects;
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if you were on this combination and then had an oophorectomy, how did the two compare? and
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how has it been with the oophorectomy?
Thank you for sharing your experiences with me,
Claire2010
Hi Claire
After my primary dx (2003) my treatment was Tamoxifen (5 years) and Zoladex(2 years). During the first year I had horrendous hot flushes and aches which were caused by the Zoladex - I was 41 at the time. Once I came off the Zoladex, after 2 years, these symptoms pretty much stopped and I didn’t have any noticeable problems with SE’s from Tamoxifen. Also my periods did return even though my oncologist didn’t think they would due to my age. Unfortunately for me Tamoxifen also didn’t work and I developed secondary (bone) mets in 2008. After chemo I was adamant that I didn’t want any oestrogen being produced in my body and, as I couldn’t guarantee that the chemo had put me into the menopause, I opted for ablation of my ovaries (radiation). This was down to some other health factors which meant I couldn’t at the time have surgery. Apart from the immediate aftereffects of radiation across the abdomen I have not had any problems with menopausal symptoms but this could be down to me being nearer the age when my natural menopause would have started. I’m also on Arimidex now which gives a few aches but, again, nothing compared to when I was on Zoladex.
It’s worth researching a bit about the SE’s of Zoladex because I think I remember reading that they are worse than when you have an oophorectomy and if you were considering having the operation anyway it may be the way to go. There are several ladies on here who have had an oophorectomy so it would be worth doing a search and also keep bumping this thread up if you don’t get many replies.
Hope this helps.
Nicky
Hi Claire
I was on zoladex and tamoxifen for 15 months before my oophorectomy 2 years ago (when i was 35). I am still on tamoxifen now. The side effects have been no different the whole way through, just a few mild flushes each day. The op itself was day surgery, keyhole op, few days recovery.
Good luck x
I had an oopherectomy in Jan due to my BRCA 2 status. I am 42 and was just like you with the tamoxifen before surgery, feeling a bit hot, a few joint aches but all managable.
Since surgery the hot flushes have definetly increased. However I am still on tamoxifen as hopefully it is working for me. I have heard that AI’s cause more joint pain.
The surgery was keyhole, 1 night in hospital, bit sore for about 2 days but no need for painkillerss and back to normal after about 3 days!
I am pleased I had it done as the worry of ovarian cancer has been taken away.
Cat
Had my ovaries basted with four doses of radiotherapy as an alternative to having them out. Felt quite nauseous for a couple of weeks then fine. No further periods 14 months later so it must have worked. Still on tamoxifen some side effects but they are getting less. The oncologist offered me the doses of radiotherapy as an alternative to the op. I took this offer up mainly because I hate general anaesthetics and hospital stays. The radiotherapy could be done in a few minutes and I could go home after.