Letrozole & me - have people had to stop taking it and try other medications? How did you get on?

Hi anyone out there

I had my operation in June of this year. Full removal of right breast having had stage two lobular diagnosed in April. Went with female consultant & surgeon advise & it’s proved to be good; no further invasive surgery required as I found out by the end of July. So no radiotherapy needed. Just five years on this particular medication. My particular issue is that as well as launching me into menopausal symptoms I also have interstitial cystitis ..  which no one else seems to have that I can find & osteo too. This med makes both worse and a detrimental effect particularly to IC. 
I had only just got treatment going again on the IC at my local Pembrokeshire hospital too. After a 6 year pause. My back story is that I had a hysterectomy at 30 and one ovary was taken then and the second ovary taken 20 years ago which was a false positive actually and unnecessary operation. & 9 operations as a result. Agh. So I don’t have any ovaries and have never experienced menopausal symptoms until now. I’m 67, just in July of this year. Anyone like this or have people had to abandon letrozole and try one of the other medications. ? Thanks . Beverley 

  • Hi Beverley,

    A very warm welcome to our forum.

    I am sorry to hear of all that you have been through before your latest diagnosis. Letrozole does have some side-effects, although not everyone gets them. I had a lumpectomy 16 years ago and then a double mastectomy 15 years ago for a second cancer. Unfortunately, I had a lot of side-effects, but the fact that I am still here is testament to the fact that it worked.

    There are other hormone therapies, and they all carry similar side-effects. Some, like Letrozole, cause problems with the joints, others cause emotional problems, difficulties with sleep, night sweats, etc. Talk to your breast care nurse or consultant and see what they advise, especially about the cystitis.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx