Risk Reduc. Stats re AIs stage 1- MO doesn't know..?

Eleanora23

(Posted also in Hormone Therapy...I could really use some help!)

Hi All,

QUESTION: Who can I get up to date stats on risk reduction for taking an AI at stage 1, vs skipping the AI?

Been on a Merry go Round with thinking i'll start AI then postponing. Finally started for second time AI (anestrozole) but have been very reluctant .. I have been asking my MO since November 2016 (the few times I have her ) how much it will benefit, and I used the terms " risk reduction," but she appeared very unsure. (I am Triple Positive ) She was hesitant to say much - partly because its stage 1 , and also that no studies were done where nobody took the AI as since Tamoxifen came out, it was considered too good to skip. I came to this MO late, after chemo but during herceptin, and truthfully I never get the sense she gets me the info I need. I mentioned that I wondered if she thought I got gotten a lot from the first MO, but I left that MO largely because she worked only 1.5 days a week and I did chemo in summer and she and her nurse were NEVER around. I was completely left in limbo. Not sure who to ask. Last year was HIGH ANXIETY for me what with the TX and lack of good MO support, and I admit now I have been avoiding asking this question. I just started AIs again but I'm not convinced and I'm worries about long term effects.

I'd switch to other MO in a heartbeat, esp because her nurse is rude as well, but where I live there arent many choices.

Thought on a hotline or something to call? Thank you! Ellie

SpecialK

If you use the prediction tool from the UK, linked below, it will show you the benefit from adding anti-hormonal therapy in a separate category from both chemo and Herceptin. It also shows the survival stats for those with no adjuvant therapy added. Just be sure to put your tumor size into the calculator in millimeters (cm x 10). I am not 100% sure, but I believe that single agent Taxol is considered a second generation chemo for purposes of this calculator.

http://www.predict.nhs.uk/predict_v2.0.html

Edited to add - what I like about this calculator for those of us that are Her2+ is it adds benefit from Herceptin, while the other available calculator from Lifemath factors in being Her2+, but not the treatment for it.

gobsmacked

I have found that the ROs are reluctant to give recurrence rates as opposed to survival rates. Presumably because Predict is backed by hard data but there are not many studies testing recurrence rates for AI/no AI.

First RO said taking an AI will reduce my absolute risk of recurrence by about 5% (in my case from 12% post radiation to 7%). He said, in his opinion, a decision to not take it would be very reasonable as would a decision to take it. He offered me a one month trial to test for side effects.

Second RO said after lumpectomy, 25% chance of recurrence is reduced to 8% by radiation therapy. If 100% ER+ and 100% PR+, AI reduces risk by a further 1/3 - i.e. from 8% to 5-6%. As I am only 100%ER+, 5% PR+, my risk reduction would only be 1-2%. In light of possible severe side effects, he recommends no hormone therapy. No trial was offered.