Letrozole - how long for ?

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Please can people tell me how long they've been told they will be on Letrozole for ?

I started it in Sept 2015 so am coming up to 5 years. When he prescribed it the oncologist said that it could be for 5 or 10 years as research at that point had suggested that the extra time might help protect you. I've not seen my oncologist since 2015, and I forgot to ask my surgeon at my last annual checkup in March.

My GP is not sure how long I should have it for, so I wondered how long other people have been told they should take it.

I've been lucky and not had many problems with it other than trigger thumb for a few weeks, and recently stiffness in a couple of toes/fingers which could be Letrozole or just age-related arthritis as I'm in my 60s.

So if people being prescribed it more recently are being told that 10 years is best then I'd like to do that as well.

Thanks,
Nic

Londonmumof2 over 5 years ago

Hi Nic,

Breast Predict now gives statistics on the additional extra 5 years if hormone blockers (based on Tamoxifen so the benefit would be a bit higher with letrozole), and it says your benefit based on what's in your profile would be 3.3% gain (with -0.1%-6.1% range). To show the benefit you need to change the figures to 15 years for some reason. My oncologist wants me to take it for 10 years, and the additional benefit to me is only 0.7%, so it's likely that 10 years is the new guidelines, as 0.7% isn't enough for me with the side effects I'm getting.

“Remember to look up at the stars and not down at your feet. Stephen Hawking,

Bramble22 over 5 years ago in reply to Londonmumof2

Hi Nic, I was first prescribed Letrozole in February and have been told I will be on it for 10 years. Hope that helps. x

Lucy51 over 5 years ago

i started taking it May 19 and was told I’d have it for 5 years.

Lucy x

Londonmumof2 over 5 years ago in reply to Lucy51

Hi Lucy, it might be different if DCIS as they consider that lower risk of recurrence?

“Remember to look up at the stars and not down at your feet. Stephen Hawking,

Lucy51 over 5 years ago in reply to Londonmumof2

i had Grade 2 invasive Ductal carcinoma & high grade DCIS. I still don’t really understand what that is and had a mastectomy and no chemo/rads, if that helps xx

Lucy x

moomy over 5 years ago in reply to Londonmumof2

I was told in April 2018 I'd be on it for 5 years (had IDC grade 2) but have recently been told (supposedly low risk due to mx and no spread at all) I could change to Tamoxifen for the last 3 years to help with my existing osteoporosis.

Hugs xx

Moomy

Londonmumof2 over 5 years ago in reply to moomy

Sorry Lucy, I just went with your profile:/

Maybe different oncologists have different strategies then?

“Remember to look up at the stars and not down at your feet. Stephen Hawking,

PictureThis2 over 5 years ago in reply to Londonmumof2

Hi Lucy51

Just responding to let you know that I have had Stage 2 IDC and following surgery, chemo and radio, I have just started on Letrozole. My oncologist has requested that this be for 10 years. Hope that helps a bit. x

"Hope, it is the only thing stronger than fear." (President Snow - The Hunger Games)

scared_2 over 5 years ago in reply to PictureThis2

Thanks for all the feedback - interesting that it still seems to vary between 5 and 10 years, presumably based on the type and spread.

Thanks to Londonmum for checking the Predict tool - I hadn't though of doing that. (must admit that I only checked it once early on and it was a bit depressing so I haven't looked again).

So I think that unless I get any worse side effects I'll persuade my GP that it was prescribed for 10 years as it may help prevent a return.

Thanks, and best of luck to all of you.

Nic

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