Cancer Research UK main site

Stopping Letrozole

Doglover60
Offline

After my mastectomy I was prescribed Tamoxifen, after a shaky start I finally got used to it and got on quite well managing the side effects .

I had a meeting with my consultant in Feb 2021 who advised me that due to my age and the possible long term problems I should change my medication to letrozole.

I didn't get on with this from the get go.  I had depression, brain fog and aches and pains.  I didn't help that I had also been diagnosed with melanoma that had been dismissed by my gp for over two years! 

Finally in October 2021 I spoke to my breast cancer nurse and told her that the side effects were unbearable and it was only adding to my anxiety.  I had my yearly scan and another meeting with my consultant who said I could go back to the Tamoxifen but he wouldn't advise it and I should persevere with the Letrozole.

He also talked about coming off of Letrozole and did a calculation on his computer which said the if I did take it for another 5 years it would possibly only give me 1% more protection and given the side effects I was having did I think it was worth it for such a small percentage. 

When I spoke to my breast cancer nurse she was quite shocked and said that most women stay on letrozole for at least another 3 years and would speak to him about it but did add that if I was happy to stop it I should do it after the 5 years.

I stopped taking it over 2 weeks ago and my brain fog has nearly gone and I am sleeping so much better.  However I am still having hot flashes and joint and muscle pain.  Does this go away?

I have also asked whether Letrozole was effective against melanoma but they told me no.

Sorry about the rambling post 

Julie 

 

 

 

 

 

 

 

  • Offline

    Hi Julie and thanks for posting

    People can find taking hormonal treatments such as tamoxifen or letrozole difficult , with varying side effects. Some cope better with letrozole, some better with tamoxifen.

    Letrozole is usually given to post menopausal women , as studies have shown that aromatase inhibitors such a s letrozole or arimidex (another hormonal drug) work better in this age group. However, when some women find they cannot cope with the side effects, it's not unusual to change back to tamoxifen or to try another drug like arimidex.

    It's only your specialist who has all your details who will be able to advise you as to whether it's best to continue with tamoxifen or to continue with letrozole or arimidex.  Usually five years is currently recommended , with some women being advised after latest studies, to stay for 10 years. Factors that they will take into account as to how long to take a drug for, will include size, grade and spread of the breast cancer and whether lymph nodes were affected.

    Side effects such as joint and muscle pain can take a few months to go, but everyone is very different so it's difficult to say. Most people also take vitamin D and calcium to help with these effects.

    I hope you are able to have another discussion with the specialist and that you come to a decision that you feel comfortable with.

    Do give us a call if you would like to go over any of this with one of us here on the helpline- Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    All the best

    Wanda

  • Offline in reply to CRUK Nurse Wanda

    Hi Wanda

    thanks for your reply it was really helpful.

    My breast cancer nurse recommended vitamin D when I started with Tamoxifen but I will start to take calcium as well which may help

    I am due to speak to my specialist this week and if he still thinks I am safe to stop the medication then I will 

    Thanks again for the advice

    Julie

     

     

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.