Off Anastrozole and Letrozole after a year

Thank you for replying. Your story made me feel good about my decision to stop these crippling drugs. Best to you

Thank you for this reassurance! Glad you are doing better.

I just started letrozole on Monday. I wonder if anyone makes it long on these drugs. I'm supposed to be on it for 10 years. Seems like you can start out ok for some but eventually things go bad sometimes years into it. Anyone been on it long term without issues?

I had a double mastectomy last year and my surgeon told me that the cancer hadn't spread, wasn't in the lymph glands, and that I wouldn't need further treatment. Then the oncology centre contacted me and said I needed to take letrazole because cancer feeds on estrogen. After doing extensive research, I decided that: 1. Our bodies need the estrogen we naturally produce and 2. Exposing myself to the probable very nasty side effects of the letrazole (and its cousins) on the off-chance that there might be a hungry cancer cell floating around somewhere in my body, did not make sense . I also found it interesting that there is NO research to show that estrogen causes cancer. And then the radiology department contacted me and said there was no need for radiation. Now, I'm in my 80's and I can see why a much younger person might feel differently and also not be so susceptible to side effects such as joint pain, etc. Everyone is different, but I'd like to remind people to do their research!

Thank you for sharing your experiences with these drugs. I'm 49 and recovering from double mastectomy with recon. I'm waiting in line for an oncology referral and know they will tell me to take one or more but I'm very hesitant to do it with my history and from what I've read from other women. I had thyroid cancer 4 years ago so the breast cancer is my 2nd cancer in my 40's and I have a history of depression and joint pain that seems to have worsened lately out of the blue post-surgery. It hurts my joints to even walk up stairs right now and I already feel 10 years older. I can't go through more pain and medical issues and still earn a living. You are all amazing and strong! In reply to the original post, I wish you a speedy recovery.

So sorry you are struggling with this too. I now take Tylenol in the a.m. as I am the most stiff in the morning. But if it's really bad I will take gabapentin at night. I use a knee pillow which is helpful when on my side.
I've also found it's easier to go down our staircase backwards. It puts less pressure on the knees.
We have to learn from each other and try to keep moving.
🙂

If you've had reconstruction, I believe you will need radiation? I wish you luck with it all; it must feel strange. I'm still trying to get used to my new body shape; even having to adjust my posture. And flat is one thing--but no nipples bothers me even more!

But people who haven't gone the recon route, might be interested in this: Before the surgery, I had a terrible time trying to find protheses, thinking it would be best done before when measurements could be taken. I'd given up on the molded shape idea ($400 per breast!--pure carpetbagging) when a retired doctor acquaintance of my niece told me to look up ....ready for a laugh?..Knitted Knockers.com!!!!! Available in both Canada and the U.S., these are knitted shapes stuffed with polyfill gauged to your cup size. It's all done with volunteers and is completely free...Even the mailing costs! I sent them a donation anyhow. The knitted knockers (say that too often and it comes out "knotted knickers" !! ) arrived flat in a mailing envelope so I was relieved when they expanded. There is a place to remove the filling or add some. They fit all my bras and are washable. I'm not quite ready to wear a bra yet, but they will tide me over when I do.

I had heard about those knitted knockers. I praise the people who make them. I did not go flat. A chance at big boobs for the first time made me think, but i went the same size. Know2 i am barbies' sister.

It had spread to two nodes, and they staged it at 1a. They said no radiation or chemo but are awaiting one test. Why it takes over a month to get a test is beyond me, and the medical system is so frustrating don't get me started. Anyway, yes. I didn't realize how badly my range of motion would be affected. I wasn't mentally prepared for having to do PT exercises to get basic mobility back. There is a lot they didn't tell me. I'm SO happy you found that place. How amazing is that! I love it. Yeah, they can go to hell before I give them 400 bucks a breast. But I've noticed with a lot of these MX bras, they're like over 100 bucks. Everyone is trying to make a buck, and it doesn't matter at whose expense. I am about to start being able to wear bras again that aren't compression, so I will look at this fabulous org.

I made the same decision. Had a lumpectomy 3 weeks ago, no node involvement, etc. stage Ia. Looked at the stats, 3 % chance of recurrence with it, 5% without in first five years. I am going to have radiation because of a new study my RO showed me, but I have decided not to put my body and mind through the misery of an AI. I am 68. The reality is, it is a gamble, a calculated risk I choose to take, although most Drs would recommend I take it. Not trying to give you advice, just letting you know it's a personal journey and everyone's risk tolerance is different. I figure the next 10 years are the best I have left, and I am going to try and live my best life. Good luck!!!