Hi
I know I have been on here before but I need to ask again is anyone taking letrozole as a protection against getting cancer in the other breast?
I have been doing loads of research on this and getting mixed messages. Whilst I was on tamoxife I was ok but having moved to letrozole I am struggling with my joints and am wondering if it’s worth not taking it anymore but I am a little worried about getting BC in my other breast. I was diagnosed with Non invasive DCIS five years ago and had a mastectomy.
I would like to speak to anyone who has done any research on this and maybe be able to give me some advise.
Suziex xx
Hi Suziex
I was diagnosed in 2010 with what was first believed to be 2cm grade 3 dcis and my surgeon said that if there was no invasive element I would not need hormone therapy at all.Then the pathology report revealed 4mm invasive and I was given tamoxifen and now anastrozole 5 years of each.I think that treatment of non invasive dcis depends on which health authority you are treated by and also the size and grade of the dcis to some extent
The hormone therapy was originally for 5 years and was then changed to 10 in line with current thinking to quote my consultant lol!!
Good luck x
Morning Suziex
I am very much a research person (NHS practitioner in a different area of healthcare) but was unable to find very little to support changing from Tamoxifen to Letrazole after 2 years. My Consultant told me 3 years ago i would need to take Hormone therapy for 10 years (this then become more widely known about 12 months after that.). It was she who advised the newest findings, in her opinion, was to change after two years. I just have to trust her on this one as i can find very little myself with a decent rationale. I changed to Letrazole 6 months ago and yes the joint pain is far worse tho’ the nights sweats aren’t as bad and i do have to take Adcal D3 due to osteoporosis.
Ultimately she always finishes any appointment with, the choice is yours, i can only advise and she acknowledges that all Consultants / units will have slightly different opinions and practice.
A number of ladies on the forum have stopped their medication due to intolerable side effects, sadly i’m not brave enough to do that even if i stuggle to walk some days and i sit in bed and wonder who that old lady is looking back at me from the mirror. My GP said recurrance is likely to be at the back of my mind, he has no idea, it is stuck on my forehead and i think abut it every minute of every day. Had therapy, CBT mindfulness, Reiki (you name it, i’ve had it). Continue to practice Mindfulness every day.
So i am on leave this week. Recently managed to secure a 24.5 hour contract, was doing 37.5hrs and struggling. Time to get up (hobble around for a bit) then paint my game face on cos i’ve been invited to my Grandson’s (2 months old today) very first sensory session. getting on the floor will be fine, i’ll worry about getting back up later…
Take Care Butterfly.x
Hi Susie
I have been on Letrozole since July 2015, had a Grade 2 DCIS cancer and had a mastectomy in May. I was told that I did not need chemo or radiotherapy but had to go on Letrozole for 5 years, I was told that Tamoifen was for pre-menopause and Letrozole for post- menopause. I am 65 and very active, play golf and do lots of gardening. I was warned of side effects, aching joints - which I had before but are now worse particularly hips and knees so take a pain killer when I have to - hot flushes which were awful and my Dr put me on Clonidine to help these, and still get tired. I have also put weight on which I find depressing, so will try and lose some of this but have read on other posts on the forum that this is not easy when taking Letrozole. I wasn’t going to let the cancer beat me so now am determined that the side effects will not beat me either.
I have not considered stopping taking the Letrozole as am really scared that the cancer will come back in the other breast - when my side effects really kicked in I was contemplating asking for the other breast to be removed if that then did away with the need for the Letrozole. I have decided that at least I am still here so will put up with the side effects at the moment. I am hoping that they will not get any worse. I am going to wait until my annual check up in May and then discuss it with the surgeon and or oncologist.
Keep strong xx
I am so happy to have come across this site. For the first time in a year, I feel like someone gets it! I was diagnosed a year ago with Stage 2 Invasive DCIS. I had a mastectomy. My oncologist had me do the Oncotype test and it came back with a 17 score. Therefore, no chemo or radiation. Just hormone therapy for 5 years. I have a history of DVT’s, so I’m limited to the type of hormone therapies I can take. I started on Anastrozole. After about 3 months, I went back to my oncologist feeling like a complete failure. I couldn’t do it anymore. The pain was so intense that there were days I couldn’t get out of bed. She switched me to Letrozole and I’ve been on it for about 7 months now. It started out okay, but now I hate it! I’ve developed osteopenia. My cholesterol has gone sky-high and I’m now taking meds for that. I’m 48, but went through menopause when I was 40. I’ve never experienced hot flashes like this though. And, I’ve gained 20 lbs. I eat exceptionally well and drink a lot of water. No matter what I do, I continue to gain weight. My hip, knees and feet hurt so bad that I feel like they’re going to crumble under the weight. I get shortness of breath. Everyday is such a struggle. I’ve been hoping that this will all eventually pass. But, it’s not sounding likely. Is there anyone out there that has had a positive turn out with this?