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5 year all clear what happens now

4 REPLIES 4
Guest user
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Re: 5 year all clear what happens now

Hi
Whilst I've not been on Tamoxifen I have been on Femara for 5 years and feel exactly the same as you. I don't like taking the drug but it does feel like a safety net and I'm worried about finishing it.
It's strange feeling being 5 years out, isn't it? We don't belong on the forum anymore, as they're all newly dx or stage 4, but we're still suffering the after effects, either physical or mental. We are getting on with our lives, but forever looking over our shoulder.
Take care

Re: 5 year all clear what happens now

Hi I think 5 years is the normal time to be on Tamoxifen, in some situations it may be changed after 3 years to AI's if you have gone through the menopause, some stay on tamoxifen for longer, but 5 years is the usual time. I was discharged from Oncology in November last year and am due to stop Tamoxifen in May and would also like to know how I might feel. I've had all the menopause symptoms but am not sure if they are side effects from Tamoxifen or from being thrown into menopause when I had Chemo (45 at the time), so it will be really interesting to see what happens when I stop Tamoxifen. I am now back on the screening programe which where I am is every 3 years.
I think it will feel really strange not taking Tamoxifen anymore, It's like a saftey net isn't it. Don't expect it will take too long to get used to it though.
All the best Melxx

Re: 5 year all clear what happens now

Hi collinsonmarsh
i have only just started taking tamoxifen so can't advise, only that as I understand it 5 years is standard and has been for a number off years so don't know why you were told that, however, latest research has shown there is a benefit to staying on it for 10 years, my gp has told me this will more than likely apply to me, might be worth enquiring?
take care
Lydia x

Re: 5 year all clear what happens now

Hi collinsonmarsh,

I have put for you below the link to BCC's publication 'Moving Forward resource pack' which is aimed at people just like yourself to help you along. Just follow the links to order your free copy. Also if you would like to talk to someone in person about your feelings please don't hesitate to contact our helpline. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

http://www2.breastcancercare.org.uk/publications/about-breast-cancer-care/moving-forward-resource-pa...

Take care,

Jo, Facilitator

Guest user
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5 year all clear what happens now

I have just been given the 5 year all clear and told to stop taking Tamoxifen. I took it for 5 years and am worried about any side effects that may occur.
The hospital said not to worry and was surprised I had been on the drug for 5 years, it is apparently normally only 3 years.
I had mammograms every year and a follow up appointment.
My other worry is that I now go back on the screening programme which is every 5 years.
Has any one got any advice or personal experience of stopping tamoxifen.
I am feeling very worried, concerned and emotional at the moment.
I know it is good to beat the disease but feel isolated now.