Coming off Tamoxifen due to Hysterectomy

Hi, 

I've been on Tamoxifen for 9.5 years since i was 44 in Dec 2012 and been told to come off it as I have to have a hysterectomy. I have to have the hysterectomy because of Tamoxifen. I have had 5 hysteroscopies over these years to remove polyps caused by tamoxifen. This time however i have a condition called Atypical Endometrial Hyperplasia which if left untreated would turn cancerous. I'm very anxious about having a total abdominal hysterectomy and coming back off tamoxifen also. I'm scared what my mental state will be like and what my body will look like, I'm already feeling very tearful and hotter than ever. Plus I'm scared coming off tamoxifen that my breast cancer will come back..

Anyone else had anything similar...?

Thanks, Jenn. 

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  • Hello Jenn and thanks for your post,

    I am sorry to hear about your situation and the anxiety that it is causing you.

    I can understand how unsettling it can be waiting for an operation to happen and what to expect.

    Doctors have guidelines that they follow and it does sound like over the years you have been monitored very closely. 

    There is some useful information on Endometrial hyperplasia written by Woman's health which you may find useful to read here

    The Royal College of Gynaecologists have produced some information about having a hysterectomy and what to expect which you can see here

    Over the years there has been a lot of debate about how long to take tamoxifen for. Depending on a woman's circumstances it is usually taken for 5-10 years and the protection from the tamoxifen will hopefully carry on working even when the drug is stopped. 

    Breast Cancer Now have some information on Tamoxifen and how long it is given which you can see here

    I am sure others will post about similar experiences but you may also find it helpful to also post on another thread where you may get more replies.

    I do hope the operation goes well. Do try and rely on friends and family for any support and help.

    Be kind to yourself and give yourself time to make a full recovery.

    You are very welcome to ring and speak to one of the helpline nurses. We are here Monday to Friday 9am to 5pm, Freephone 0808 800 4040.

    Take Care,

    Catherine

  • Hi Catherine

    Thank you so much for your reply and very useful links. I really appreciate it. 

    Jenn

     

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