Hi. I was diagnosed at age 47 Stage 3 IDC PR/ER+ HER2- in 2018. Bilateral mastectomy, no reconstruction, dense dose AC/T chemo, radiation, Anastrozole, and decided to due 4 rounds of Zometa to be as aggressive as possible in preventing a recurrence as I have a young child and that 1-2% reduction in risk seemed worth it to me. Well after 3 treatments I had to have a tooth out and I turned out to be in the unfortunate group of people who get Osteonecrosis (ONJ) as a side effect . My oncologist had told me there was a 1% risk of this. The ONJ specialist however says he has seen a substantial increase in this side effect. My case is mild to date and hopefully will never require reconstruction if I am super careful and able to avoid any additional jaw trauma for the next 12 years (which is how long the drug stays in your system). If I never get a recurrence in my bones it will still have been worth it! These decisions are all so hard and I probably made it harder for you but I think if I were Stage 1 or 2 I would think really hard about using these drugs and talk to an oral surgeon who has expertise dealing with ONJ as well as your oncologist to get a clearer picture of the cost/benefit of this course of treatment. I have horrible bone pain with Anastrozole but have started taking 30 mg of Duloxetine daily and it has helped me tolerate the AI for 9 months at a time then when the bone pain returns I take a 2-4 week holiday from the AI but stay on Duloxetine and then when pain subsides I start up again. It’s my understanding that the AIs have a far greater impact on reducing recurrence so if at all possible, I’d try really hard to use those. Best of luck and good health to you!
Tess

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