Life after Tamoxifen

Ask our Nurses your questions
1

I am 31 years old. Diagnosed at 27. Had a lumpectomy followed by 6 months of chemo, 24 rounds of radiation, and have been on hormone suppression since then.

I have been off of tamoxifen for about 3 months and have not had much info on what to expect or what may be normal.

I was very foggy and unmotivated for the first 3-4 weeks. Some of my joints have been sore as they were when I first started tamoxifen. My cycle has been irregular after about 6 months of regular periods. And I have had increased breast tenderness starting around mid cycle until my period starts. Because my cycle has been erratic it’s been hard to know if it is hormone related until my period starts and the tenderness wanes.

My understanding is that tamoxifen most specifically blocks estrogen from breast tissue, is this something to be expected as my breast tissue is reintroduced to estrogen again?

2

Hi optimalamoeba,

Thank you for posting. It is understandable that you have questions about what to expect when you stop taking tamoxifen. Many people contact us unsure if the side effects they experience when their treatment ends are normal.

Tamoxifen blocks the effects of oestrogen on breast cancer cells that may be in the breast or anywhere in the body and can cause menopausal side effects such as joint pain and difficulty concentrating whilst taking it. The side effects after stopping tamoxifen can vary from person to person and will usually lesson over time. The symptoms you describe do sound hormonal in nature. Generally, periods will start to stabilise after a few months of stopping tamoxifen if someone has not already gone through the menopause naturally while taking the drug. This would be more likely to happen the nearer someone is to the age when menopause naturally occurs.

As you are concerned, it may help to talk to your treatment team or GP about this and the joint pain you have been experiencing. They may be able to check your hormone levels.

Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

You can ring the Someone Like Me team on 0114 263 6490 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

We also offer face to face and online Younger Women Together support events which are designed specifically for younger women (20-45 years) with breast cancer.

You may also be interested in our resources that are particularly for those who have come to the end of their main hospital treatment. These are known as our Moving Forward services and include our Moving Forward booklet and Moving Forward courses.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen to your concerns, talk things through and signpost you to more support and information. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

If you would prefer one of our nurses to call you. To do this, please complete this form ticking the box agreeing to a call back.

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.

Out of hours you can leave a message and we will call you back when we next open.

Best wishes

Katy

Breast Care Nurse

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