How much does hormonal treatment reduce risk?

Definitely ask your oncologist. I believe it is based on many factors. I was shocked how little benefit it was providing to me specifically.

Take a look at this thread; the question you asked about what your risk will be if you don't take hormone therapy is discussed:

https://community.breastcancer.org/forum/78/topics/872175?page=1#idx_24

Yup, that's what I would estimate too. It's still important to talk to your MO, but now you have a number in your head that you can ask about - and if your MO gives you a very different number, you can ask why.

We really are playing the odds through all of this. Obviously, the lower the risk that something bad (mets, for example) will happen, the better. Yet even if there is only a 1% chance of developing mets, that means it's one person out of 100, and someone is going to be that 1 person. On the other hand, if the risk of something bad happening is really high - say 95% - it still means that 5%, or 5 people out of 100, won't have that bad thing happen. Any one could draw the lucky straw and be in that group of 5. So either way, it is very much a crap shoot.

I never saw any statistical study conclusions, it is like it is automatically assumed you will do hormone therapy. The one tool, cancermath, said in my case I could expect a 1% risk reduction taking AI drugs.

Michelle, I agree with you that sometimes it's best to listen to the advice of our doctors - they are the experts, after all.

That said, what raises a question to me in Whatjusthappened's case is that her doctor didn't give a straight answer to her question about how much risk reduction she would be getting from Arimidex. We need the best information possible to make our decisions, and every decision is a balance between benefit (risk reduction from the treatment) and risk (health issues that might arise as a result of the treatment).

Whatjusthappened, can you get a second opinion? From what you describe (cardiac issues, osteoporosis) it sounds as though Tamoxifen might present fewer risks, but this is something that a MO should be discussing with you in detail, comparing the AIs to Tamoxifen with consideration to your other health issues. And you should not be expected to start endocrine therapy, which presents you with these health risks, without understanding how much it will reduce your risk of mets. Risk tolerance is very personal, and you can't make the benefit vs. risk decision without this information. Any responsible MO should discuss this with you.

Agree with Beesie and edwards750, we are our own best advocates.

Asking those questions is completely appropriate and your MO should be glad you are a full partner in your medical treatment.

With the normal caveat about everyone being different and everyone's cancer being different, I'll offer my wife's experience because it sounds somewhat similar to your's, Whatjusthappened. When her IDC was diagnosed in 2016, her MO strongly recommended chemo and hormone treatment. This combo would supposedly reduce the risk of recurrence from about 16%-18% to about 10%-12%. My wife had reservations about the side effects of both the chemo and the hormone and opted out of each: it just seemed to her that a 6% to 8% improvement wasn't worth the potential complications involved with chemo or hormones.

Well, here we are 3 years later and my wife now has MBC in both lungs. It was found early (and by accident), and she's now on hormone treatment (Femara and Ibrance). Obviously just because this was the diagnosis for my wife doesn't mean it'll similarly happen to anyone else, and we're trying to look forward not backward. Everyone has to do what they think is best for them (as my wife did), but since you asked for similar situations, I thought I'd share my wife's experience. Good luck with your decision. I know it's not easy.

Whatjusthappened,

I just had a conversation with my MO to try to pin down the benefits of endocrine therapy for me, since I've been having a very hard time tolerating the tamoxifen.

One thing she was adamant about was that oncotype does not predict the impact of hormonal therapy. It assumes hormonal therapy, and predicts the impact of chemo. She did do a backwards extrapolation, basically an increase of 30-50% of my listed oncotype risk. But still, she she insisted on the principle.

It's kind of frustrating that there's no testing to predict the impact of hormonal therapy for any specific individual (based on their own physiognomy, or tumor profile, or whatever). Hopefully in the not too distant future there will be. But for now I think it is like the earlier days of chemo, where everyone has to do it just in case we are the ones that will have the big impact, even knowing that for many people it might have no impact at all.

Whatjusthappened, you comment about CancerMath showing a 10% risk reduction seemed high to me. I just put in your data, and came out with very different results. So you might want to redo your numbers.

Of course CancerMath is a general program and less specific to you than the Oncotype test, but what CancerMath did say that is relevant is that an AI would reduce mortality by 32% at 15 years.

Doing the backwards math, this means that if your risk of mets is 13% with an AI, based on your Oncotype score, your risk would be 19% without taking the AI. This is completely consistent with all the studies I've read about AIs providing approx. a 1/3 risk reduction, relative to mets/mortality.