I was diagnosed with invasive lobular cancer in January 2025 and underwent bilateral mastectomy after learning that ILC likes to come back. From a surgical point of view I had a 2% chance of return if I chose bilateral mastectomy and a 15% chance if I chose lumpectomy and radiation. I had the surgery and my tumor was HR positive HERS negative and grade 2 stage 1A because it was not in my lymph nodes. The oncotype score was 22 meaning I was not a candidate for any chemo. When I discussed it with the oncologist she highly recommended I take an AI drug for five years although she made it clear that with my markers. I still had a 8% chance it will return even after taking AI medication. I am 70 and very fit and active and decided to give it a try. Not every woman has all the potential side effects.

I have been on letrozole since April and have so far limited side effects from it. Initially I felt some joint pain and had a little hair shedding but that seems to have disapated for now. I still get periodic hot flash but they are manageable.

I do agree that less is better and if there is anyway I could stop the AI if new advanced treatments surface, I would hope my oncologist would recommend it. Meanwhile I am closely monitored by my cardiologist and my family doctor for issues.

I like all of you pray I found my cancer early enough and no stray cells found their way elsewhere in my body. Since invasive lobular cancer is called the sneaky cancer and likes to return to your bones, brain, liver or or elsewhere, it is important to stay vigilant about your blood work and any unusual problems you may develop.

It is a personal decision for sure and for now I am trying to stay positive and make the best of things. I do think diet and exercise make a big difference. I eat mostly plant based and organic and try to also eat for bone health since AIs can postentially decrease bone strength. I also stretch, lift weights, walk, do yoga for balance.

Sending positive thoughts out to all of you.