More dangerous to start then stop, or never start Tamoxifen?

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ceanna
ceanna Member Posts: 5,270
edited February 2015 in Hormonal Therapy - Before, During, and After

I could only find a couple of passing references to this topic on these boards so I am asking separately.  I am hesitant to start the tamoxifen the medical oncologist recommends due to preexisting health problems although I have reluctant go-aheads from heart specialist and gynecologist.  My question is--what have been people's experiences with going briefly on and then off tamoxifen, or successes or failures with taking reduced doses of tamoxifen, or do you know of any research, which discusses whether or not starting and then stopping tamoxifen increases your chances of BC reoccurrence?  In other words, is it more dangerous to not start tamoxifen or try it (even briefly) and then stop because of SEs?

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  • Carynbrit
    Carynbrit Member Posts: 51
    edited February 2015

    I asked this today.. at the discussion about taking Tamox..and was told.. although DO check this out...... because I have big concerns about it...that its better to try it, then stop... than not take it at all.




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  • ceanna
    ceanna Member Posts: 5,270
    edited February 2015

    Thanks Carynbrit for your doctor's input. 

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  • leaf
    leaf Member Posts: 8,188
    edited February 2015

    This study may or may not apply, since its for BRCA1 and/or 2 carriers, but it showed that taking tamoxifen up to 1 year had a decreased occurrence vs no tamoxifen, and longer use had a further decreased occurrence. http://www.ncbi.nlm.nih.gov/pubmed/24951267

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  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited February 2015

    Thanks leaf. Trouble is, those who design these drugs and dish them out haven't tried them for size! The ses can be dreadful and presumably some of the most severe ones actually lead to other conditions so that statistics might show a different path if things go wrong. Yes, they do work but possibly at a price.

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  • leaf
    leaf Member Posts: 8,188
    edited February 2015

    I'm so sorry you're going through these difficult decisions. In any treatment decision, you have to weigh the risks and the benefits, and take into consideration how you will feel about each option. Its a very individual decision, because everyone is in a different situation, and has different feelings about taking tamoxifen. Some people have very severe adverse effects, some have tolerable adverse effects, and some have no adverse effects. Its usually impossible to predict how you will react to tamoxifen, so the decision is hard.

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  • Loulee
    Loulee Member Posts: 26
    edited February 2015

    Hello ladies,

    My oncologist wanted me to start taking tamoxifen after i finished my chemo and i asked her to delay it after my surgery and she said yes !! Had my surgery on the 12th and i have been reading about the controversy of having it with or after radiation !!

    Would appreciate any feed back !!


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  • Lmcqueen
    Lmcqueen Member Posts: 21
    edited February 2015

    My MO wanted me to at least try it as well. So far the only thing I am noticing is a little bit of hair loss.

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