Coming off Tamoxifen due to Hysterectomy


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. 

  • 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,


  • Hi Catherine

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



  • Hi I have been on tamoxifen for 2 years now but few weeks ago had a period (which stopped as soon as I took tamoxifen 2 yrs ago) so I have just been for a scan and they said there might be a polyp. I gave to go to gynaecology next Thursday for more tests. It just feels like it's never ending.

  • Hi there

    Please try not to worry about this, it is a very common thing when on Tamoxifen and even if you're not. The tamoxifen does cause a thickening in the lining of the womb where polyps can grow. If you do have one it's best to get it removed with a hysteroscopy which takes about 2omins. While it is a little uncomfortable it's best to get this done and it's always good that the doctors are keeping an eye on you so please try not to worry. I was through it many times so anytime you have period pains or spotting but no period keep getting yourself checked out.

    Please let me know how you get on. Sending positive understanding vibes. 

    Jenn x

  • Thank you for the reply its very helpful. The hospital always seem pretty quick with appointments especially since having the cancer so I never feel fobbed off. It's good to hear that someone else has had the same problem and to be able to get advice from. I hope you are doing well.  Take care x

  • Hello and thank you for posting.

    As other forum users have said, tamoxifen can cause polyps. They are very rarely anything to be concerned about and can be easily dealt with.

    Here is an information leaflet on polyps from a London Hospital Trust, your Hospital Trust may also produce one.

    And here from the UK cervical charity Jos trust.

    Waiting for appointments and more information can be difficult. If you can, in the meantime, try and not search for answers online as this could cause you increased anxiety. 

    Take care and hopefully you will know more soon.


  • Thank you for the information and advice. I will have a look. I have been referred to get a hysteroscopy to check out if its a polyp I have as the ultrasound nurse said it might be a polyp and to check the thickness of lining. 

  • Hi Jenn

    Did you have hysterectomy?  How are you?

    I am facing same as you.  On tamoxifen 4 yrs now.  I am 45 but have bleeds.  All tests done and biopsy's are all clear thk god.  I am advised hysterectomy if bleeds continue but wondering about ovaries and do they take them?

    Would love to hear an update from you.

    Thks Cheola 

  • Hi Cheola and thanks for posting.

    I have replied as the last posting was a year ago, so your post may not be seen.

    I am sorry to learn that you may need to have a hysterectomy. Your gynaecology team will be best able to advise you on whether or not you should have your ovaries removed, as they know your situation. 

    If you have gone through menopause or are near menopause then it may be recommended that the ovaries are removed. You may find it useful to look at the  NHS information on things to consider if a hysterectomy is being recommended.

    You may find it also helpful to post on the 'living with cancer ' section on Cancerchat where you may find that you get more replies from people in a similar situation.

    I hope this helps a little. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care, all the best


  • Hi Jenn

    like yourself I had breast cancer and was on tamoxifen and I had an total abdominal hysterectomy five weeks ago.  I started letrosol the week after the operation, the operation is a big operation but I’m healing well and apart from menopausal symptoms I’m ok,  I’m going to ask the consultant what help I can have with these as they don’t like people who have had breast cancer to have hrt, hope your operation goes well.  From Claire