Letrozole - I dont want to stop taking them

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1

Ive already spoken to one of your nurses, but thought it worth a try on here in case anyone has any knowledge re a sympathetic oncologist.

So, I’m 10 years post diagosis.

I’ve taken Letrazole 10 years and my bones are fairly ok.

However, given my diagnosis - strong hormonally driven / stage 3c / grade 3 / 13 nodes positive with (extracapsular) growth beyond the nodes, I desperately want to continue taking them, but Im hitting a brick wall with it.

There is very little research on the duration needed for anyone with a similar diagnosis- but what there is suggests a need to take an AI such as Letrozole LONGER than 10 years. Yet, the oncology team wont support me. I’ve done my homework and I feel this is a post code lottery. I know people in my situation who are being prescribed longer than 10 years - however, they are in London, Im in Yorkshire.

I’m currently trying to find a sympathetic oncologist in Yorkshire who I might be referred to for a second opinion.

Can anyone help?

Thanks, Angie

2

Hello Angie,

Thanks for posting.

Is natural to feel concerned about stopping hormone therapy. You are not alone in feeling this way.

Clinical trials have demonstrated that some postmenopausal women may benefit from taking an aromatase inhibitor (AI) for up to 10 years.

Trial results have shown that letrozole and anastrozole may reduce the risk of breast cancer coming back (recurrence) or a new cancer developing in the other breast, if they are taken longer than five years. However, there was no significant difference in overall survival (the number of people dying from breast cancer).

Aromatase inhibitors all work in similar ways and share many of the same side effects, and these have to be balanced against the benefits of continuing treatment.

Treatment teams will follow national guidelines which recommend that extended therapy (up to 10 years) with an aromatase inhibitor be offered to, or considered for, postmenopausal women with oestrogen receptor positive (ER+) breast cancer depending on their risk of disease recurrence.

You explain knowing people who are being prescribed it for longer than 10 years. It sounds likely that your treatment team cannot support you continuing on letrozole for longer than 10 years is because there isn’t yet the evidence to suggest this is beneficial. It might help to know that hormone therapy will continue to reduce the risk of breast cancer coming back for many years after you finish your treatment. This is known as the carryover effect.

The Association of Breast Surgery Guidelines for endocrine treatment for breast cancer might be of interest. And this update on the duration of therapy.

Although you have spoken to us perhaps it would help to talk this through again. Our number is 0808 800 6000. And you can share experiences with other women on the hormone therapy section of our forums.

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.

Best wishes

Jane

Breast Care Nurse

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