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Tamoxifen

7 REPLIES 7
Member

Re: Tamoxifen

Hi all. I am supposed to be on Tamoxifen for 10 years. I was DX age 54 grade 1 stage 1, 11mm no affected lymph nodes and when I went on Predict the result was that I should not be on endocrine treatment. I am coming up to 5 years from diagnosis this Summer and due to have my annual scan in June. Do you think I could discuss coming off Tamoxifen as it has ruined my skin (I am covered in unsightly pigment spots) and my hair is very thin which really affects my self esteem given I do presentations and chair meetings at workso feel my appearance does matter.

Member

Re: Tamoxifen

Im 42 had grade 2 breast cancer my tumour was 23 mm. Had the onc test and radiotherapy plus been told tamoxifen for up to ten years x it still after a year and a half wacks me out for an hour after taking it and makes my cycle long but after researching its benefits stay with it ladies xxx 

Community Champion

Re: Tamoxifen

Hello Daisy, 

As Jill says,  using information from NHS Predict may be a helpful tool to guide decision making.  However,  as also indicated,  it is not a crystal ball.  We still have to weigh up our individual pros and cons.  You say you are desperate to come off it,  but have been told to stay on it.  But medical staff do not force us to swallow a tablet every morning so if you really are desperate to come off it then you are obviously free to do just that.

 

  However,  I would discuss matters first with medical/oncology staff regarding  how it is affecting your life, helpful management of side effects,  and your individual risks and benefits so that you make an informed choice that you are comfortable with. 

 

Best Wishes to you, 

Chick 🐣 x

Community Champion

Re: Tamoxifen

Community Champion

Re: Tamoxifen

You can  see what benefit you are likely to get by putting your info into NHS Predict - I will try and post you a link .Some people benefit much more than others but there are still things that as yet they cannot predict in terms of re-occurrence some people don't actually benefit at all from hormone therapy some people will be more at risk than the stats suggest so it's a bit of gamble .A lot of people stop because their quality of life is so badly affected. I stopped because it was implacated in me getting womb cancer .How long have you been on it - Oncologist told me first 2 years are most crucial.

 

Member

Re: Tamoxifen

Can I ask why you came off Tamoxifen? I am desperate to come off it! However I’m told I have to stay on it. Did you have info that meant you knew it was only of small benefit??? I’m desperate for info from people who come off it. What stage were you and grade etc?

Community Champion

Re: Tamoxifen

Hi Lea , I stopped Tamoxifen after 2 years and my thin hair soon thickened up .
Member

Tamoxifen

After taking tamoxifen for five years, my oncologist thinks she will discontinue it when I see her in December.

 what can I expect or hope for after I give it up?  Will my hair come back healthy and thick, instead of wispy? 

Will my constipation improve?  What about bone pain?