Hi I have just been advised that when I finish my letrozole in April after 5 years that I have to go onto tamoxifen for another 5 years and I did not see it coming. Told friends and no one is getting how it affects me. Worried about changing from one therapy to another and I the side effects I’ve been living with hot flushes, joint pain, insomnia and brain fog for 5 years whilst trying to be happy at work and just get on with it. Any advice. I am starting a course through the hospital in February to help with side effects x
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Welcome to the forum @millie6 . You might also want to post in the Hormone therapy section of the forum as once the nurses have responded to your post here the thread will be closed. Im sure there are lots of forum users who will be happy to share experiences with you . Best wishes Jill .
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Dear @millie6,
You do not hastrong textve to go on to another drug. The choice will always be yours. Oncologists can only make recommendations. They should discuss the reasons for their recommendations with you plus all risks and benefits. They should give you the opportunity to ask questions and give you time to go away and think if you need it. You have done well to tolerate an AI for five long years. I wish you well. Love Tulip x
Hi millie6,
Thanks for posting.
It’s understandable you’re worried about changing from letrozole to tamoxifen, especially as you weren’t expecting this change. It also sounds as though you’ve had a difficult time living with the side effects of letrozole over the last 5 years and are worried about the possible side effects of tamoxifen.
Like any drug, tamoxifen can cause side effects but it’s difficult to say how these might affect you as everyone reacts differently. You might find it helpful to call our helpline and talk this through. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary.
You might also be interested to know that some people say they notice a difference in the side effects they experience when they take medication made by a different manufacturer. This suggests that some people find medicines such as letrozole and tamoxifen that are produced by 1 manufacturer seem to suit them better than another. It might be useful for to make a note of the side effects you are having and discuss these with your treatment team, or GP or ask the pharmacist who dispenses your prescriptions if they can supply you with a different manufacturer that may suit you better.
We are often asked why people are recommended to take hormone therapy for more than 5 years. Clinical trials have demonstrated that some people benefit from taking hormone therapy for 10 years rather than 5. These benefits include a smaller risk of the breast cancer coming back (recurrence), or of developing cancer in the other breast. If you haven’t done so already, we would suggest you speak to your treatment team about the change in medication that’s been recommended for you. They will be best placed to talk through the benefits and disadvantages of continuing with treatment in your situation. As @Tulip29 says the choice whether to start tamoxifen will be yours.
Many women who have treatment for breast cancer experience menopausal symptoms such as hot flushes, joint pain, insomnia and brain fog and this can very much affect quality of life.
It’s good to hear that you are attending a course to help with the side effects you’re experiencing. You can also connect to other women who have had a similar experience to you through our Someone Like Me service. 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. More details about the service an be found on the link above.
As mentioned above, do call our helpline if or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Best wishes
Vic
Breast Care Nurse
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As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.