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Tamoxifen

17 REPLIES 17
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Community Champion

Re: Tamoxifen

On balance the Oncologist decided there was probably more risks than benefits from hormone therapy for me due to the toll on my bones and risk of blood clots as I keep having to have surgeries on the bones I break .It does worry me that I don't have that back up but nothing much I can do about that .I don't have ovaries anymore so I suppose that will reduce the oestrogen risk - it's not great for my beard though !! 

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Community Champion

Re: Tamoxifen

So good to hear from you Jill 🤗. Made my day! I too had gynae issues with Tamox thickened uterus lining got it removed but thankfully no cancer. Its a rollercoaster isn’t it? So no more hormone therapy for you? Guess its a relief but also scary know what you mean. I am still down for yearly mamos at my hospital. Thought they would stop after 5 years but no have my appointment for next year. Guess they will be doing it for further 5 years. Sending you a massive hug Jill i have missed you xxx 

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Community Champion

Re: Tamoxifen

Hi Dee, just saw your post and thought I'd pop in and say hello ! 5 years - hard to believe really all that time has gone past .Just got my 5 year mammogram results back clear too - had same feeling of dread as I opened the letter as always - being discharged now from Oncology and back to 3 yearly mammo - good but also scary .I had to come off the Tamoxifen after 18 months as it very kindly gave pre-cancerous cells in womb -subsequent hysterectomy set off a genetic disorder I didn't even know I had and has led to brittle bones !! That's probably why it doesn't feel like 5 years - been kept busy with other health **** !

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Community Champion

Re: Tamoxifen

Know exactly what you mean Geranium. My oncs told me when I finished intial treatment as I was 44 that 5 years Tamox followed by 5 years AI was the way to go pending my menopause function at 5 years. I am at one of the best cancer hospitals in London so they are at the cutting edge of all the latest research. 
So good to have virtually met you Geranium so makes a difference going through this with other ladies. 🤗 

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Member

Re: Tamoxifen

Hi Dizzy Dee

So pleased your mammo was clear. It's always scary waiting for the results.  I was exactly the same as you. I was diagnosed at 49 and periods stopped immediately.  I am now 55 and not sure if I am menopausal as only night sweats.  That would be great to hear another oncologist point of view.  I am not sure whether to request to see a different oncologist as my oncologist didn't even want to see or speak to me just had a message via the doctor "keep taking the tablets."  I do read a lot on the internet and it does indicate armotase inhibitors are slightly more effective and less side effects.  Maybe my oncologist things because I am ok on Tamoxifen then I should continue, but ifthere is something better why not give it a go.  Thank you so much for your reply. After 6 years it's good to talk to someone in a similar situation to me. I know it sounds crazy but I have buried my head in the sand (due to being scared) and I am only now finding out things. 

 

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Community Champion

Re: Tamoxifen

Will ask oncs about 3 month tamox free before test too and see what they say and report back. 🤗 

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Community Champion

Re: Tamoxifen

Hi Geranium, 

Just had results back from annual mamo all clear 😊 Hospital phoned me told me to keep taking Tamox i have hormone blood test next week to see if I’m menopausal. If I am will have dexa bone scan before starting Letrazole. If i’m still peri menopause will have another blood test 3 months time. Thanks for advice will ask my team when i get blood results it takes 2-3 weeks for results. I’m 49and like you period ok but when i started tamox 5 years ago they completely stopped so difficult to tell if I’m menopausal oncs said. Will let you know how it goes and thank you. Makes such a difference knowing someone is going through the same. Thanks Geranium we’ll get through this together 😊🤗

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Member

Re: Tamoxifen

Hi Evie

Thanks for reply.  My B.c. was grade 3 er positive her negative ductual.  Yes it so confusing on this menopause  business.  Conflicting information.  I had my bloods tested by a gynaecologist who told me I was peri menopausal 3 years ago but when I saw my oncologist she said my readings would be effected by Tamoxifen and I should come off it for 3 months before having a blood test.  I have looked up A1 and Tamoxifen and if you are post menopausal I think recurrence is slightly lower and the side effects are slightly better. I will let you know it might be in a few weeks what the oncologist says.  

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Community Champion

Re: Tamoxifen

Hi Kitkat23 - thanks so much for coming on and sharing your experience and advice. I’m really sorry to hear that you found another primary and wish you all the very best for this treatment.

Hugs, Evie xx

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Member

Re: Tamoxifen

Hi Evie

I took tamoxifen after last diagnosis in 2018 however this time round Onc says I will definitely move onto letrozole....I will have a blood test to determine if post menopausal and if not I will have my menopause induced....I probs am tho as I’m 55.  Like you say, lots of different advice but everyone has different circumstances.... My Onc said, in my case, that as I have been taking tamoxifen for 2 years and still got another primary, ( opposite breast this time) grade 2, IDC 1 node positive, 7/8 ER+ , I need to start on AIs to give me the best outcomes.

Take good care x x

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Community Champion

Re: Tamoxifen

Hi Geranium - mine was grade 2 IDC ER+ and HER-. That’s interesting to hear what you were told about a menopause test while on Tamoxifen. I had my bloods tested while I was seeing a gynaecologist because of womb issues, and he didn’t mention anything about coming off Tamoxifen. Curious, there is so much conflicting info out there isn’t there! I was pre-menopausal on diagnosis but post menopausal after a couple of years on Tamoxifen.

When I have googled (which I know I shouldn’t do) the various articles do suggest that AIs are better for post menopause - but I guess we are all individual and these articles are general. I did give my poor oncologist a grilling about the research I had found, but he was adamant that recurrence stats were similar. So I’d be really interested to hear what your oncologist says and anyone else on here.

You shouldn’t feel guilty requesting an appointment. You may well be able to have a phone appointment - and that really isn’t going to take long out of your oncologist’s day, but is going to help you enormously to be sure that you are taking the right drugs for you.

Evie xx

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Re: Tamoxifen

Hi Dizzy Dee thank you so much. I am definitely going to see if I can get an appointment with oncologist.  I feel a bit guilty going at the moment as they are probably busy with a backlog from lockdown with cases that are more urgent.  Did you have to come off  Tamoxifen for 3 months and then have your blood test. I can remember in the in the initial meeting of taking Tamoxifen she told me this.  I am 56 and not sure if I have gone through the menopause because as soon as as I started Tamoxifen it effected everything.

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Community Champion

Re: Tamoxifen

Hi Geranium,

I have just had the same conversation with my hospital team. I am 5 years post treatment and 5 years done on Tamoxifen. I am now having a hornone blood test to check my menopause status. And then having another one in 3 months time. They want to put me on Letrazole 5 years And told me this after my intial treatment. I had Grade 2 ILC. In my case AI better than Tamox. Hope that helps x

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Re: Tamoxifen

Hi Evie thanks for reply.  I will contact my GP and make an appointment with the oncologist. I will let you know the outcome.  I didn't think there was a test to see if your menopausal when you are on Tamoxifen.  I will ask my GP.  When I saw the oncologist initially she said if I wanted to go on to an armotose inhibitor I would have to come off Tamoxifen for 3 months to get a true reading to see if I was menopausal.After 5 years I went to my GP and asked for an appointment but the oncologist said she didn't need to see me and said to carry on with Tamoxifen for another 5 years.  My cancer was grade 3 hormone positive her2 negative.  It would be good if we could hear from anybody else to see if they have been given the same advice.   

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Member

Re: Tamoxifen

Hi Evie thanks for reply.  I will contact my GP and make an appointment with the oncologist. I will let you know the outcome.  I didn't think there was a test to see if your menopausal when you are on Tamoxifen.  I will ask my GP.  When I saw the oncologist initially she said if I wanted to go on to an armotose inhibitor I would have to come off Tamoxifen for 3 months to get a true reading to see if I was menopausal.After 5 years I went to my GP and asked for an appointment but the oncologist said she didn't need to see me and said to carry on with Tamoxifen for another 5 years.  My cancer was grade 3 hormone positive her2 negative.  Is this the same as yours?  

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Community Champion

Re: Tamoxifen

Hi Geranium - I have been taking Tamoxifen for 3 years and at the end of last year had a discussion with my consultant about changing to one of the aromatase inhibitors, following a test that showed I am now post menopausal. As I seem to be ok on Tamoxifen, I was nervous about changing to one of the AIs because of side effects I had read and heard about. My consultant told me that there is very little difference between staying on Tamoxifen or moving in terms of prevention, so in my case he decided to keep me on Tamoxifen.

Do you continue to have regular appointments with your consultant after 6 years? I guess you can request a phone consultation now? Maybe also ask your GP to arrange for a test to see if you are now menopausal?

I’ll be interested to hear back from you and what you decide to do - in case you find different advice. Evie xx

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Community Manager

Re: Tamoxifen

Hello Geranium,

Thank you for your post.

I hope that my response will help our members to see it and offer their experience or advice.

In the meantime, for clinical questions, please know that our Nurses are here and happy to talk.

Best wishes,

Zoe

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Member

Tamoxifen

I have taken Tamoxifen for 6 years and now wondering if I should change to Armidex as I am 56. I am not sure if I have gone through menopause due to Tamoxifen symptoms. My cancer was oestrogen positive her2 negative. Has anybody else changed from Tamoxifen as I have read Armidex might be more effective in stopping recurrence.