Life after tamoxifen

Less than one minute read time.

Hi everyone this is my first post so hope I manage to get it right!  I was diagnosed with breast cancer 5 years ago and had a lumpectomy and radiotherapy.  I took tamoxifen for 5 years and finished taking it just over a week ago.  As you can imagine I was thrilled to be taking my last tablet but since then I felt terrible and just wondered if anyone else had experienced any effects after having stopped taking tamoxifen.  My oncologist said that he did not recommend I took it longer than 5 years and my GP agrees.  My oncologist said that I would feel so much better once I stopped taking it but no one mentioned I might feel worse to begin with.  Would love to hear from anyone who has similar issues.

Anonymous
  • Hi Gill358

    Bet you thought after all this time you would have had enough of this place :)

    Well, you sort of got it right - Noticed you just joined the Life After Cancer Group(link) was this message meant to go there ? As it has come up as a blog post, so hasn't gone to the group.

    Pleased to read they didn't advise you to have another 5 years worth, but if you could add the withdrawel type effects you are getting when you copy in the text to post it. Others may recognise this and reply with some advice.

    Withdrawal symptoms from Tamoxifen is known about, perhaps there may be more information about this on the BreastCancerCare forums ?

    Did you just stop suddenly taking them or reduce the dosage and wean yourself off the Tamoxifen over a couple of months ?

    G n' J

  • FormerMember
    FormerMember

    Hi,

    I've been looking for information on Life after Tamoxifen and can't seem to find much? . . I was on Tamoxifen for 5 year after single left mastectomy (no chemo or radiotherapy). Finished Tamoxifen last Sept 2017. I had periods as normal for the first two years of Tamoxifen, some heavy, some not. These changed to brown spotting from time to time then stopped all together and nothing for two years until - January this year, just three months after I finished Tamoxifen, I get an awful flood of mucous and watery pink discharge. Long story short - two biopsys, trans vaginal ultrasound and hysteroscopy plus a diagnosis of silent reflux all in the last three weeks (May / June 2018) and I'm told it's all caused by oestrogen!! I'm 54 years old. No one seems able to tell me if I am post menopause or if this will settle down. Waiting for biopsy results and back at Doc's re reflux next week. Anyone else had issues after Tamoxifen ends ? ? I had no issues on it! Concerned that I still have oestrogen racing round my body!

    Thanks :)

  • Evening LuLou

    Welcome to the Mac Community, not a club people are exactly queing up to join :(

    I assumed a simple blood test could confirm if you are now pre or post menopause. Then again perhaps you fit into the peri-meno phase sort of on the cusp ?

    If you joined the very active (and friendly) Breast Goup (link) and started a New Discussion copying in your above text there may be other ladies who have had similar issues from Tamoxifen who can reply with their opinions and advice ?

    Tamoxifen can have an effect on the womb lining and can cause thickening, so perhaps this is what they are checking out ?

    Hope this is of some help, take care, G n' J