Has anyone on letrozole experienced extreme fatigue?

I took letrozole to reduce the breast tumor (ILC) for 6 months and found I was so fatigued, feeling “down”, etc. I was able to switch to anastrozole which I have now been on for 3 months and I feel much better. I am scheduled for the “Goldilocks Mastectomy on 3/26. Talk to your doctor as there are several different AI’s you could be switched to. Knowing this doesn’t end with surgery but I will be taking this medication 5-10 years. I’m concerned about long-term use but must trust my oncologist surgeon along with my faith. Keep communicating with your doctors to get answers as we know our bodies best.

@buckokey thanks for your insight. I had ILC too but had surgery first. The fatigue seems to just be kicking in. I see my oncologist in May and will ask her about switching. Do you have aching joints too?

Well at 79 (😩) I do have joint issues but can’t be sure it’s the AI. I am having knee problems but that will have to wait until I have my surgery later this month. In my case, my lump had been in my breast at least 1-1/2 years but nothing done after a radiologist said it was”nothing to worry about”—even though I had a lumpectomy in the opposite breast many years back. Trusting the medical team, I just accepted the diagnosis until I winded up in hospital for pneumonia which led me to an Ob-Gyn who changed the course, thankfully. I was initially told I needed a mastectomy but saw a highly respected oncology surgeon (Portland, OR) who said we could first shrink my egg-sized tumor and then do lumpectomy. So that’s the path I’ve been on until 3 months ago when she then said if she was unsuccessful on first attempt to remove it all it would probably become a mastectomy. After all these months (2-1/2 years total), I am just tired of dealing with all of it so opted for mastectomy. She said she would do the “Goldilocks” method (search Google for details). I’d love to hear from others who have had this and see if they are happy with the results. Don’t think it’s very common though. Are you glad that you did surgery right away? In hindsight I kinda wish i had because I’ve been through so many tests, including placement of SAVI scout which was an awful experience as I had a very bruised shoulder and two cracked ribs after lying on my chest and shoulder while they tugged and pulled on me 90 minutes! It was very unpleasant to say the least! So I’m just ready to get this all over with and move forward. All the best to you and your healing journey.

@buckokey Yes I am very glad I had it. For me last January I asked for an ultrasound because I have dense breast tissue and my Gyn ordered one after questioning its need because I heard it was important to do if you have dense tissue. Thank god I did. The ultrasound found a suspicious spot which was biopsied days later and confirmed it was invasive lobular cancer. Two weeks later they still had me get my scheduled mammography. It showed no evidence of any malignancy - they could see the biopsy marker but not the cancer which hid in my dense tissue in the upper quadrant. I was told that surgically I had a 15% chance of reoccurrence with a lumpectomy but only 2% chance with a mastectomy. I had a bilateral mastectomy a month later in february because I didn't want two different looking breasts and I didnt want to worry about cancer developing in the other breast. I am now 71 and I know I have arthritis in my bad knee but I feel it has gotten worse - or stiff - I think it might be the letrezole. I also have some arythmia problems with my heart - I have persistent atrial tachycardia despite four ablations. So I am on metoprolol, lisinopril and eliquis for my heart. The first two can also add to my fatigue. I refuse to go on other medications at this point but I am willing to try another AI medication if my body could respond differently to it. I just don't know what is causing the fatigue. I am tired after sleeping 8 hours! LOL. I do exercise every day and lift weights and do yoga and some aerobic workouts. I try everything - eating right etc. We can only do what we can control but it is so frustrating!

I am so thankful to have this forum to talk with other women and find out what they are doing and thinking.

Thanks so much for sharing . It sounds like you have been through so much. I wish you all the best in your healing journey too. But I do think we have to stay on top of our doctors and do our own research. No one knows your body like you do so we have to be our own best advocates!

@wews
It seems all doctors are different in treatment plans. I’m not sure how I’ll look when this is all over! lol! Having had a lumpectomy on one side vs. this Goldilocks, who knows! She said it will have a semblance to a breast and similar in size to my already deformed right breast so I’ll need some sort of prosthesis to appear somewhat normal I would guess!

I didn’t mention before but I have been wearing a heart monitor which I just turned in last week so awaiting those results. I have researched a lot, too, and these AI’s can cause heart issues. I’ve not had any heart problems in the past so it does make me wonder. Plus my cholesterol has gone up and I’m gaining weight 😩. I was planning on knee replacement a year ago but then this all has happened. Up until a week ago I was not having any pain but I find if I’m on my feet over an hour my knee starts hurting. When it rains it pours, I guess. I only have my son who has been very supportive so hoping all goes well with my outpatient surgery as I live 90 minutes away from hospital in Portland. And I always have nausea afterwards. They say they will be able to prevent it but being under anesthesia for 2-3 hours is worrisome to me. I agree that it’s great to have the ability to share our experiences with others. I’d like to join a support group but evidently there are none in my community.

All good wishes to you and I think you might do well changing from letrozole to anastrozole or possibly tamoxifen to help with your fatigue. It sure helped me when I switched anyway. Take care!

@buckokey thanks. I hope your surgery goes well. I
Had no pain from my mastectomies so hopefully you will be the same.

I will speak with my oncologist when I see her in May. Maybe she will switch me.

I will say this - the more I move the better I am! Motion is lotion.

Stay positive and strong! We are here for you! Hugs

Yes, I take it. I am really exhausted every day. I feel like 80 year old women most days. This is my forth switch. Al them are the same just different names.

Have you had the same fatigue and joint pain on all of the ones you tried? I can’t believe I have to do another 4 years on them.

@ldennis23 , sorry you are struggling as so many of us are. Someone suggested that I take my estrogen blocker at night so I have just started that and will see if that helps the fatigue.

I do take mine at night for that reason. Some days seem worse than others. But my knees are so stiff. It has to be the letrezole! Thanks for the tip. I hope it works for you.