I was on letrozole for 13 months, with Lupron, then later a bilateral salpingo oophorectomy. I was premenopausal at the time of my initial diagnosis, and in my early thirties. I didn’t yet have symptoms of osteopenia, but was considered to be high risk because of my family history and age, and the dramatic decrease in circulating estrogen that was part of my treatment plan.
The bone and joint pain involved with letrozole really got to me after a few months. I noticed it most each morning when I got out of bed. I could feel each and every bone in my feet, and it hurt to take my first several steps before the day or walk down stairs.
Ultimately it was the severe hot flashes, insomnia and mood disturbances (depression) that made me switch from the aromas inhibitor to Tamoxifen. I found the Tamoxifen MUCH more tolerable than letrozole. My mood improved significantly, as did the joint pain. I stayed on Tamoxifen for another 6 or 7 years… but found myself again struggling with depression. At that point I pulled the plug. My oncologists originally wanted me to do 10 years of either Tamoxifen or an Aromatase inhibitor… but we called it good enough at that time, and I chose quality of life.
In the midst of the Tamoxifen I also received 6 rounds of Zometa, which theoretically was supposed to help prevent bone mets.
Anyway… I am now 12 years post initial diagnosis, and still have no evidence of disease. My original diagnosis was a grade 3, stage 3, with serious LVI and 14 positive nodes. The tumor was millimeters from the chest wall and the skin. And even though it was only 10% ER positive, I honestly think that the aggressive reduction of circulating estrogen is probably why I am still NED now. That plus an extra chemo regimen that was part of a trial.
I seem to have good bone health these days, but admittedly am way overdue for a bone scan. I have had two horse related accidents involving broken bones over the last 8 years. One was a clean fracture in my wrist that healed easily with no complications. The other was a broken metacarpal last fall (spiral fracture)… and again… healed easily. I asked my ortho about my bone health when I broke the metacarpal last fall… he said my bones looked 100% normal, and it was very typical sports related injury (I did it while jumping… didn’t close my hand and my horse popped up in the shoulder after getting to a bad distance). He saw zero signs of osteoporosis, but he did chastise me for skipping density scans.
Anyway… that’s a very long answer to your question I’m planning on finally getting up to date with a bone scan soon, because I am now less nervous that we will identify a density problem, and I will be told not to jump or ride anymore. That’s pretty much why I have avoided it the last two years. I was having too much fun, and didn’t want to be told to stop.
I hope Tamoxifen is better for you like it was for me. And I hope you can figure out a way to get several years of it done, depending on your treatment plan. Just do the best you can, and know that you have my sympathy. All of these meds are REALLY tough, and have craptastic side effects. But there is light at the end of the tunnel, and some symptoms eventually do get more tolerable. Hugs.