When to stop Letrozole

I was prescribed Letrozole about 6 weeks before my operation, bilateral mastectomy with implants. I had no radiotherapy or chemotherapy. After five years, last September, my GP said that I should stop takingt the Letrozole, but could not answer any of my questions, e.g. why should I stop; would I benefit from stopping; would I benefit from continuing, who would monitor me, etc. She said that she would find out and let me know. By the November, I was so stressed about the situation that I stopped taking the Letrozole. As I had still not received a response by March this year, I visited my nearest cancer clinic to find out more. I received a telephone call a few days later to advise me to keep taking it for another five years. When I said that I had stopped at the end of November, I was advised to start again, as that would be okay. 

I started taking the Letrozole again in April, but now realise that all the side effects have returned, making me realise how much better I had been feeling without the drug.  So, I am now in turmoil about whether to carry on or stop. 

There is no check up system in this area, so how would I know if I had a secondary cancer, and whether this was more likely without the Letrozole.  And, without blood tests, which my local surgery are not keen to do, surely there would be no warning signs.

I am a calm, level headed person, but at the moment the mind games will not go away.   

  • Hello AvLM

    I'm sorry to hear about the situation that you find yourself it. Weighing up the pros and cons of taking long term medications can cause lots of worries and it sounds as if you'd really benefit from being able to talk through your concerns with someone. 
    Are you able to make contact with the clinic who advised you to restart the medication for some advice? You might find it helpful to talk things through with one of our team of nurses. They may be able to offer you some support and information to help you decide what steps you want to take next. You're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

    I do hope that you're able to find the support that you need to make the right choices for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Hi, How did you get along, have you stoped or continue, my biggest question is how does anyone know if cancer returns or not, and how about quality of the life. I feel fretful on letrozole, I cant manage it. and i only been on it for 2 month now, after been on tamoxifen for a year

    Yulia