Aromatase Inhibitors: Did you decide to go on them or not?

Alas, I don't see a differentiation between local disant recurrence and spread. The senior member of the science team at Oncotype told me they tend to think the risk score covers both IF the tumor margins were adequate and clean but their legal counsel recommends against making such a statement. I think it's interesting that they also discover undiagnosed invasive cancers sometimes. The cells behave differently when tested and they've had to notify doctors to re-examine the patient and rethink recommendations for treatment. Talking to the people at Oncotype was very informative and welcome.

I talked to them a lot in 2015 when I was diagnosed. With grade 3, high ki67%, lymphovascular invasion, and ambiguous HER2 (only definitely negative in one out of 4 tests), I was troubled by doctors' reliance on the (newish) Oncotype but would have struggled with chemo. And my cancer was highly hormone-positive. Now, 7 years later, even treatment for metastasis avoids chemo as much as or as long as possible when ER+.

The good news is how quickly the understanding and treatment of this is evolving. I agreed to a sentinel node biopsy only because it would be another data point and maybe good news, which it was. Imagine how much more science will know and lives saved in the near future.

My oncologist(s) and endocrinologist cite the breast cancer industry thinking that aromatase inhibitors can reduce the risk of recurrence by approximately 45%. With that current thinking, your risk of recurrence if you do not take them is approximately 6.5% if the OncotypeDX score is valid. (My doctors think it is.) I don't know if that helps but gives you a "if I don't take aromatase inhiibitors" framework. Oncotype's customer support is very good and can describe more.

Others here are way more informed than I am about anastrozole but I thought that I'd read somewhere that aromatase inhibitors have a carry-over effect for some time after not taking them. Not sure for how long, or how strong, just that there is a lingering benefit?

Thank you.

Intermediate scores for Oncotype are 18-30 so a score of 17 is on the high end of "low." With that and grade 3, I think you are wise to power through with the meds. People are now taking them for 10 years, and my doc said 7 is as good as 10. Unfortunately I had to stop at 5 due to severe osteoporosis, but if my osteoporosis had been mild, I would have done another two years. I miss my Femara!

My mom was on anastrozole for 5.5 years after a DCIS with no spread and she has permanent arthritis now, memory loss, high blood pressure and cholesterol which she did not have before. She did not notice any side effects while taking them, but when she stopped it became more obvious what her possible side effects are. It's so hard to say if it was the anastrozole or not but those are her symptoms. I'm on tamoxifen as I had toxicity with the AI's confirmed by my Onco, so I'm struggling with hair loss and would love ideas as to how to try and lose less if it's possible while still taking tamoxifen.

I feel I’m in a similar position as you I’m scheduled for a lumpectomy on Friday, followed by radiation and then anti-hormone meds. I had a spinal fusion nine months ago and a knee replacement two years ago. I”lol be 68 in July. Menopause was horrible for me. I admit, I am very confused and scared.

It is a scary time to be facing, but you will get through this. Think of all the trials you have been through in your life. Then realize you have conquered them all and survived.
I would also remind you that the few voices you read the most are only a tiny percentage of the people who have taken endocrine therapy. I took anastrazole for more than 5 years after 5 of tamoxifen. There were side effects and I look in the mirror and go “wow, I look way older than my years” but none of the side effects were so bad that I quit. Many women have little or no side effects from these drugs.
Deciding to take them or not should be an individual decision based on the best information about your cancer, and not on someone else’s side effects.