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ruffianfan55 avatar

Decide against aromatase inhibitors?

Breast Cancer | Last Active: Aug 27 10:53am | Replies (124)

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Hi @ruffianfan55
12 years ago, at 54, I had stage 1 BC 7 mm. ER/PR+ HER2- BRCA2+ CHEK2+. Double mastectomy, 6 lymph nodes removed all clear. No other treatment recommended. The oncologist told me only 3% chance of recurrence for me. He said Tamoxifen would make little difference for me so not worth the side effects. Sounded good to me. I never expected to see BC again.

7 years later, at 61, I had a very aggressive (Ki-67 50%) 1.3 cm recurrence in my chest wall and pectoral muscle. Had that tumor removed. Positive margin. Had 39 radiation treatments and I’ve been on Kisqali and Letrozole (AI) for 4.5 years and so far so good. These are now forever meds for me as long as they keep working.

If I had it to do over again, I would have taken tamoxifen in the first place. No way of knowing if that would have kept me cancer free, but I’ll always wonder.

Best of luck with your decision and future health.

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Replies to "Hi @ruffianfan55 12 years ago, at 54, I had stage 1 BC 7 mm. ER/PR+ HER2-..."

Thank you, I would have made the same decision, perhaps the tamoxifen wouldn’t have changed anything. I pray that now you never see BC again!

I hear you on your situation.
Yes, we don't know if the cancer will ever return. My feeling is IF an AI is recommended after a post mastectomy/lumpectomy, I would give them a trial despite all possible awful side effects.
I am betting for one story of success with AI's, there is story of a failure, re-occurrence happens. We are all between a rock and a hard place. Our oncologist's can not predict the future, they simply give their best evidence best recommendations and we roll the dice.
Don't obsess about the past. You made your best decision, at that time, in the moment. What's done is done. Now move forward as best you can. The very best of health to you. Live in the present moment. That is all anyone of us have anyway.

I had a chest wall recurrence following a mastectomy as well. Initially diagnosed stage 2 with 1 lymph node positive. Apparently if there is no lymph node invasion there is a 95% chance the cancer has been contained and there is no spread. My recurrence happened 2 weeks after surgery. With the spread into the chest wall my radiation oncologist said I was now stage 3B. I had max chemo and multiple surgeries to try to get it out with clear margins. My MO said that without the meds there was a 70% chance of stage 4. The AI reduces it to 35%, the CDK4 inhibitor takes off another 7% and the zoldronic acid 3%. These drugs are amazing - now 25% recurrence instead of 70% - but only if they are combined with a successful surgery. And radiation also helps.