Appetite & weight loss - Tamoxifen

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Hello

I have been on tamoxifen for nearly a year and since my breast cancer diagnosis last summer I have lost 8kg in weight taking my BMI to 19.1

Is it possible for tamoxifen to cause appetite loss & therefore weight loss? I don’t seem to be having the usual side effects like hot flushes for example (I feel the cold more).

Is it something my treatment team should look into or my GP? Or is it nothing to worry about? I am due my final review & discharge from the hospital next month. Will I find out how long I need to take tamoxifen for at this point?

Finally if I am allowed a short break from it to see if it alters my appetite/ weight, is there a danger of getting new side effects I didn’t have before when I resume taking it?

Many thanks Pray 

  • Hello AnnieD,

    Thanks for your message. My name is Michael and I am one of the Macmillan cancer information nurses.

    Tamoxifen can make you feel sick, but because of your weight loss of 8kg over the last year, and also because you have a low BMI, we would strongly recommend you contact your clinical team at the hospital straight away, and not wait until your final review next month.

    Usually to treat breast cancer, most people take tamoxifen for 5 years. In some situations, you might take tamoxifen for 10 years. To prevent breast cancer, you take tamoxifen for 5 years. 

    Your clinical team, including your breast care nurse, will be able to assess you to find out what is causing your appetite loss, resulting in weight loss. They may also be able to refer you to a dietician.

    They will also be able to tell you about whether they would recommend you taking a short break from it and also how long they would like you to take it for.

    I hope this information helps. Please feel free to get back in touch if you want more information or support.

    Best wishes,

    Michael H,

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref FM

  • Hi Michael

    Thank you for your reply. My consultant arranged blood tests (including CEA, CA 125, CA 15-3) and a CT Scan which I had done at the end of September. The September blood tests were normal but the CT Scan showed a 5 cm complex ovarian cyst and 3 cm fibroid. I am seeing a consultant gynae oncologist this week. I have had more bloods done (same tests as before and a new one CA 19-9) so am waiting for these results.

    Can a CT Scan reveal what type of complex cyst it is? Can it show up malignancy? I am terrified I will be dealing with ovarian cancer right off the back of breast cancer.

    Can a complex cyst alone account for a 15% loss in body weight or does the fact I have lost all this weight strongly indicate cancer?

    Can tamoxifen cause complex ovarian cysts?

    Finally, my breast cancer was mucinous; is there a link between mucinous breast cancer and mucinous ovarian cancer?

    I hope you can help as my BCN just says to wait to ask the gynae consultant these questions, but the wait is excruciating.

    Kind regards,

  • Hi Annie D

    Thanks for getting back us.

    It is understandable that you are finding it excruciating, whilst you are waiting to find out your results of your recent tests.  Many people feel anxious during this time.

    This is some general information about ovarian cysts that you might find helpful to read.

    In this information about  tests for ovarian cancer, including CT scan, you will see that this is used with a number of other tests to help make a diagnosis.  

    Your BCN is quite right by saying to wait to speak with the gynae consultant before looking for more information, however I wanted to signpost you to reliable sources of information, rather than searching unreliable websites.  

    Whist you are waiting for your gynae consultant appointment, it may be helpful to try some of these mind-body therapies. They may help you to take greater control of your feelings and feel less anxious.

    You may also find it helpful call us and speak with one of our Cancer information nurse specialists.

    I hope this information helps. Please feel free to get back in touch if you want more information or support.

    Best wishes,

    Michael H,

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref DC