Decide against aromatase inhibitors?

Did you have an Oncotyoe test. Did it show your risk of distant Metastasis in 5-9 years. Surgery is always 98perrcent. That other 2 percent the way I see it is easily that one or 2 little cells that get away and can lodge somewhere else in your body and show up years later . You could have taken Inhibitors and been so allergic you may have stopped as has been the experience of some . So you cannot say conclusively that you got bone cancer because you did not take the inhibitors. Cancer cells are very tricky and are geniuses. I always imagine them as little parasites always trying to judge my body's next move and find a way around.I had mastectomy for invasive cancer ,clear margins, no lymph nodes involved. My oncotype was high and my oncologist has me on chemo to zap any cells that may have gotten away and also to disrupt the cancer DNA . Is it a guarantee? We won't know till years from now. After researching I wanted to be armed with an option in case AI don't work out for me and the chemo has not been bad at all .

It sounds like they didn't get everything on your initial surgery. Since your initial diagnosis was stage 2 they would have tested all your tissue post mastectomy right and that takes about a week or 2 for results. So is it that your staging changed when they examined your tissue . I can't imagine a reoccurrence that fast. More like unclear margins from initial surgery from the sound of it that they needed to go back in to clear but I'm no expert

Yes. Unclear margins which turns into a 4 cm tumor. Found by my daughter two weeks after the surgery with bandages all on. My staging changed from 2B to 3B. And from no chemo to max chemo. Strategy being neoadjuvent chemo to shrink the mass to get it out as it was sitting on the ribs.

Are you saying your DNA does not attack cancer as it should? They are testing mine. This is my 5th cancer, all different. If I’m understanding, because of your DNA they are doing chemo? Is that correct?

I’m so glad you posted this. I’m the same age, with the same diagnosis. I’m also struggling to figure out if all the side affects are worth it. So thank you!

Just sharing a recent article about early research proposing a potential additional positive benefit to the AI letrozole https://nypost.com/2025/07/27/health/breakthrough-as-two-fda-approved-drugs-are-found-to-reverse-alzheimers-including-restoring-memory/?utm_source=facebook&utm_medium=social&utm_campaign=nypost

Lots of luck to you on your 3rd attempt with these meds. I was Stage 1A and decided to go the mastectomy route. I did not need radiation and chemo as my oncotype score was 2. I started on Anastrozole and was on it for about 1 year 3 mos before I got carpal tunnel in both arms and a bad case of DeQuervain's tendonitis. It also triggered some arthritis in my thumbs so quite debilitating. This caused my oncologist to try switching to Letrozole but this made things even worse. So, we took a brief break at which time my symptoms seem to get better. We then tried Tamoxifen for about 5 months but I got the most painful crippling calf cramps that made it too painful to walk at times so I stopped. So, I have decided to stop taking these meds since April and am feeling so much better. So I was on the drugs for basically 2.5 years. I felt I gave it my best but not being able to function using my arms and legs was the primary decision. I did not consider this living as I was in so much pain every day and unable to do everyday chores. So, to me there needed to be a balance of quality of life. Of course, it was not an easy decision but I am just glad the muscle/joint pains/tendonitis has gone away as I was truly afraid it would become permanent. The drugs did result in osteoporosis in my left arm so I am trying to address that by exercising more now that I can. I was fortunate that it did not lead to osteoporosis in my spine/hip. I wish you well in our venture too.

@shelbym
Are you saying you’ve had breast cancer 5 times with a different makeup each time or you have had 5 different types of cancer? If 5 different types can I ask what they are? I’m curious if they are all related to one tumor suppression mutation. I have two known cancer mutations (BRCA2 CHEK2) but my family has had so many different types of cancer that I’m guessing there are more genetic mutations in the family.

Mine was Stage 1 IDC PR/ER + HER2 negative. Clear margins, no lymph nodes, 1.3 cm tumor removed via lumpectomy and same surgery had oncoplastic breast reduction from a almost C cup to an A cup. No radiation, no AI's no chemo and I also declined the Oncotype test. I was 64 when I was diagnosed I'm no 67 and so far so good, clean mammograms since, praying it stays that way!
It's a tough decision but you have to really weigh risk to benefit and see what works best for your particular case. Best of health to you and everyone here.

. It's that particular cancer cell's makeup that makes it more aggressive. So by disrupting it's dna it just gives me more a fighting chance. Cancer is just something else. I am so sorry to hear you have had it five times and for sure it does arise from a series of genetic changes that disrupt normal cell function and can be inherited. For me though I think I acquired mine through environmental factors or some other error during cell division. As my oncologist says it is not anyone's fault . Sometimes it just in the blue print or some other factor that can trigger them to rapidy start dividing.. I will tell anyone right now as a first in my family that stress did it for me.. that is the environmental exposure for me for show.