Just updating, incase this is of use to someone down the track. I am now 2 years post zoladex and 4.5 yrs into the tamoxifen (age now 45).
There was definitely a difference stopping zoladex. My bone density decreased a bit more in my hip? but has increased in my spine. As you may know tamoxifen reduces bone density in premenopausal but increases it in menopausal. Whist it shows I have mild osteopaena, Ive had two bike accidents and lots of ski falls and things have been fine. Otherwise, I think my moods picked up, but I have found other side affects got worse as time has gone by. I have horrendous, angry mood swings, short term memory is reallllly bad. Recently I have lost some weight which I had not been able to shift before (nothing else changed). I am sooo looking forward to coming off it. I have still not had a period and my hormone levels suggest I am still premenopausal. I have been asked to consider an extra 5 years but for me this is not something I plan to do, and something another one of my oncology team had prepared me for by calculating relative risk. This is very individual, for me the side effects have made every day hard and all I can do is now count down my packets, strips and individual pills!! I also have not been able to run much and I hope I can pick this up again. I read a study which indicated very high levels of running had a very big impact in risk reduction so it's like everything on balance and very personal but it's something I really resent that I have not been abe to keep up easily (I overheat so much the best I can do is jog on the trampoline with the air con on (and that's in winter!!). If I don't feel that different I will consider going back on it. Hope this post is helpful to someone. As hard as it's been, its been worth for me sticking on it. Best luck to you all.
I finished 2 years of Zoladex in September 2013 and am still on Tamoxifen. I too had about 8% bone loss, although my bone density is still within the normal range. I found the Zoladex gave me dreadful joint pains, so I spent most of the two years on it hobbling about and feeling miserable. Taking painkillers upset my liver (as it doesn't like the Tamoxifen so subsequently my liver enzymes are high, although I have been assured that I can see the treatment out safely).
When I stopped the injections, I slowly found my mobility became much better and can now run up and down the stairs with ease! I still have some side effects from the Tamoxifen - depression, and weight gain mainly, but a small dose of Venlafaxine helps with the depression, and I can lose weight if I put my mind to it. Sometimes my legs are very stiff if I sit for a long time, but that is getting better, and I don't get so many hot flushes now.
My periods didn't return, so cannot answer that for you, although now at 54 I wouldn't expect them to. However, I had blood tests to check my hormone levels recently and they are not low enough to switch to Letrozole. So I guess I will be on Tamoxifen for another year at least. The original plan for me was two years Zoladex, five years Tamoxifen and two years Letrozole. I take it that all of you ladies had Zoladex instead of chemo?
Yes, it has been tough going, but these treatments have been proven to work and I keep telling myself that it's not forever.
Good luck to you all - I hope it isn't too tough for you.
I had two years of zoladex and lost 8% bone density even though I was (and still am) on tamoxifen which has a bone strengthening effect. I think the standard is to do a bone density scan in the first six months on zoladex to give a comparison point. I am not keen to move onto AIs as they also cause bone density loss.
Thanks Joolz for responding. I am about to cease in the next month after 27/28 months, so I will post how it goes.
Welcome to the BCC forums. I'm sure some of the other users will be a long soon to offer you their experiences. In the meantime you might find it helpful to give the helpline a call on 0808 800 6000. Here you can talk through your thoughts with a memeber of staff who will offer you a listening ear as well as emotional support and practical information. Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator