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Tamoxifen Side Effects

Rosie78
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I was successfully treated for Breast Cancer in 2019. I was put on Tamoxifen and have to continue to take it for quite sometime.

In 2022 I chose to have a double mastectomy and a hysterectomy within a couple of months as I carry the Brca 2 gene.

Just to add to this my mastectomy went horribly wrong and I now have PTSD.

I am currently suffering greatly with horrendous mood swings, night sweats, brain fog, memory and concentration issues.

My main problem is waking during the night, this can happen 4-5 times every night, I am exhausted all the time. 

I am unable to have HRT because I also take epilepsy medication.  Is there anything I can do to get my life back? 

  • Hello Rosie78,

    Thanks for getting in touch and welcome to our online community.

    My name is Carole and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I’m sorry to read about the side effects that you are having.

    You’ll probably know that surgery to remove the ovaries, and hormonal treatments, like tamoxifen, can cause menopausal symptoms.

    We’d recommend that you get in touch with your GP or hospital team. They would want to know about any new, worsening, or persistent side effects you’re having.

    There are practical ways to reduce these symptoms, or you may be prescribed drugs or treatments that can help.

    I appreciate this may be more difficult for you because you are on epilepsy medication.

    However, we’d encourage you to get in touch with them so that you can discuss what is best for you.

    It sounds as if you have spoken to a healthcare professional about medication, but I’m not sure if you were referred to a someone with expertise in this area.

    The National Institute for Health and Care Excellence (NICE) guidelines (NG23) recommends referral of women to a healthcare professional with expertise in menopause for counselling about the risk of developing an early menopause and the management of estrogen deficiency symptoms associated with breast cancer treatment.

    It might be helpful to contact your breast care nurse and ask if there is a menopause clinic you could be referred to. Or if you’d like to find your nearest menopause specialist, the British Menopause Society (BMS) might be able to help.

    Keeping a note of symptoms can help you to explain to a healthcare professional how you are feeling. The Balance app is one way to keep track and the information on their website aims to provide unbiased and factual information.

    You’ve mentioned that you also have PTSD. I’m not sure if you’ve had treatment for this, but Mind and PTSD UK are 2 charities which can offer support. We may be able to offer you some counselling too, through our partnership with Bupa. The referral process is explained here

    I hope this is helpful.

    Please don’t hesitate to get back in touch here, or on the Support Line if you’d like to talk to one of the nurses.

    Our online breast cancer group can be a good source of support too, and Breast Cancer Now’s ‘Moving Forward’ courses are another way to connect with people who understand.

    Sending my best wishes,

    Carole

    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. 

    Our ref: KH

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