Tamoxifen side effects

I have just finished taking Tamoxifen having been on 20mg a day for five years. I was put on it as a preventative measure as I have a high family risk. I’ve been off it for ten weeks and the sweats have just about stopped though they were very severe for the first eight weeks. However now I’m suffering from extremely sore breasts, particularly my nipples and behind my nipples,  and inflammation around my uterus to the extent I find it difficult to pee sometimes. Has anyone else suffered from this?  If I know it’s what’s expected then I’ll suffer on. Any help is gratefully received. Thanks. C

  • Hi there Catherine ...

    I think a trip to your G Ps would help... or a call to your oncology team ... I'm on tamoxifen too .. got really bad emotional side effects on starting it ... but really fine now .. think when I stop them I'll do it by cutting tablet in half for a week... then quarter for a week ... just maybe stopping suddenly may have kick started your symptoms ... would like to know what they say ... 

    Good luck ... hope it's gonna be fine ... fingers crossed ... Chrissie x

  •  

    Hi Catherine,

    Welcome to our little community. I am sorry to hear about the symptoms you're having since stopping Tamoxifen. I must confess that I was only on it for a year, but I didn't have any of the symptoms you mentioned afterwards.

    Unfortunately, I developed a second cancer in the same breast a year later and, had to change to Letrozole instead, following a double mastectomy. I stopped taking this in July 2017, after being on it for 6 years.

    Your oncology team are probably more au fait with these symptoms than your GP is. It sounds to me as if you would be better phoning your breast care nurse tomorrow and asking her advice. I am sure that she will get you in to see the consultant again if she is at all worried.

    Do please let us know how you get on.

    We are always here for you.

    Kind regards,

    Jolamine xx