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Tamoxafen Post Menopause

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Tamoxafen Post Menopause

Hi, just wondering if anyone is taking Tamoxafen after menopause? 

I was on Tamoxafen for coming up a year and then had my overies removed because I was now classed as post menopause I swapped from tamoxafen on to Anastrozole. Since taking this I’ve had a bad hip I was thinking just grin and bare it but it has been getting worse and worse. 4 and a bit weeks ago I had double Diep and the worst pain during recovery has actually been my hip because of the way I’ve been having to lie on my back in bed etc.

Anyway I saw my oncologist a few days ago and she said that she doesn’t line prescribing AI’s to young people because it makes muscles and joints ache and hinders day to day life and makes you age quickly. She persuaded me to go back on Tamoxafen but now I’m panicking that statistically my chances of reoccurrence May now be worse????

The hip pain is terrible I am looking forward to it going and being able to perhaps join a gym and shift some of the weigh I’ve gained since diagnosed and treatment.   

8 REPLIES 8
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Community Champion

Hi MellyL - thanks for sharing your story and advice on the difference in risk between the 2 treatments. I will note all this for my discussion with my consultant about my continued treatment. I hope all’s well with you now. Evie xx

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Member

Hi. Just to let you know that I was 59 when diagnosed. As already post menopausal the hormone treatment recommended for me was Anastrazole. I couldn't tolerate it. Managed 10 months as determined to take it. I was so bad, BCN advised me to stop for 6weeks. Then started on.. Tamoxifen.
The Predict scoring cannot differentiate between endocrine treatments, but I understand it's a really small % difference in risk. Nothing's guaranteed anyway. I'm happy I changed to the "old" drug
Good Luck

 

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Community Champion

Hi Ann - thank you very much for your further clarification, that was really useful and will help me when I next meet with my consultant to discuss whether to stay on Tamoxifen or change.

I hope you are doing well.

Hugs, Evie xx

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Community Champion

Hi Evie,

I had an early mammo diagnosis & was peri-menopausal at diagnosis, hence tamox, with the option of anastrazole after menopause. In my case, according to NICE guidelines there was not a lot of difference in outcomes, although AIs are technically more effective, post meno.  As I’m fine in tamox & like that it is protective of bones, the onc & surgeon were happy for me to stay on it. 

Hope this helps

ann x

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Community Champion

Hi WolfEE and Ann

 

Ann - thanks for posting that reply, that was interesting for me to read too. Is there a way consultants can tell how much difference it makes to you if you are on Tamoxifen versus AI? I would like to be armed with info before I see my consultant next. You are so right about “if it ain’t broke”.

 

WolfEE - there are various threads talking about “the fear goblin” that lurks and worries us to a greater or lesser degree, so you are certainly not alone in being a worrier. I loved that description of the fear as a “goblin” - others describe how they firmly tell the goblin where to go when he creeps up. That made me laugh as well as having a serious side and somehow helped me to give the fear a name and tell it to go (if that makes any sense, it’s getting late and I’m probably not making much sense now!)

 

Hugs to you both

Evie xx

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Community Champion

Just to say, WolfEE, I'm on tamoxifen without any major issues. I did have the option to go onto anastrazole, but stayed on tamox, as it did not make much clinical difference in my case. I also like that tamox is protective of bones when post menopause. So my feelings were, it it 'aint broke then don't fix it!'

Inevitably, those having problems will report it, but there's also many of us who are tolerating it just fine or find any side effects manageable.

It might well be ok anyway & if there's any issues, then deal with it then.

Wishing you well with it

ann x

 

Member

Hi Evie, thank you for your reply. 

I agree quality of life cannot be ignored the last 2 years have been awful really being diagnosed, chemo, radiotherapy, breast surgery, lymphnodes, hysterectomy it has been one thing after the other the only part of my treatment I found tolerable was the Tamoxafen and after the horror stories I had read before starting this pleasing so swapping to the AI was a shock and having this hip pain constantly reminding me bothering me at work and stopping me doing fun things at weekends just as I was starting to feel free from all the dreaded C treatments. 

I am a big worrier and reoccurrence does keep me awake at night but I do believe the hip and heaviness would send me into a depression. I am giving the tamoxafen a go I just hope I can shake my paranoia over it not working so well.

Bone health is a big plus I am at high risk of poor bones just from having overies our before age 40 so knowing tamoxafen is kinder on bones is a good thing. X   

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Community Champion

Hi WolfEE

I’m sorry to hear that you are suffering bad hip pain. I have been on Tamoxifen for 2 years and have recently been tested and found to be menopausal now - I’m 51. My consultant is talking about changing me to an AI as it seems to be the “usual” thing to do once menopausal, but I’m nervous about changing as I have so far tolerated Tamoxifen ok. I understand the statistics show a slight reduction in recurrence for those on AIs but I don’t think it can be very large as my consultant has not said that I will definitely change. There are lots of things to consider, including quality of life, and also I believe Tamoxifen helps bone density. It’s a tough decision. Happy to chat more if I can help. I wish you all the best as you recover from your op and get back to the gym.

Evie xx