Hi All,
New member here and breast cancer patient (post-meno, E+P+, PT2, PN1a, Grade 2, surgery, chemo, radiation, AIs, OncoDX 25).
I'm a researcher for a living, so I'm one of those irritating patients that researches everything to death to make sure I'm well-informed. 😀 This is offered in NO WAY as a replacement for medical advice, just to share what I've learned in my travels. As always, your mileage may vary. 🙂
I too have been struggling with the issue of AIs, and have researched the pros and cons of each (already been through Anastrozole and Letrozole, and supposed to start Exemestane next). A couple things in case they're useful:
1. Whether or not an AI is worth the tradeoff of side-effects/potential damage vs. recurrence risk is a VERY important decision for you. One tool mentioned here is the (very well researched) Predict Breast cancer tool (be SURE you're using the latest version (v3) as they update their models based on new data). It allows you to provide details on your cancer type, then lets you turn treatments on or off to see how they could impact your outcomes. In my case, the difference taking AIs would make to my risk reduction is 1% difference at year 5, 2% at 10, and 3% at year 15. For someone who's not tolerating them well and scared of damage, this'll be critical to know.
2. There are outstanding oncologists everywhere, and hopefully you have one. But be aware that in some systems, that onco has been told that the protocol is "AI or Die" and they have to relentlessly stick to that script regardless of the actual relevant data for you. For them, it protects from liability if they don't offer it, but be aware, that may not always be the final answer. (At the risk of offense, I'm so tired of videos of old, white drs. telling women to stop the complaints and just "suck it up and take the medicine." Let's see you do it.) :-Z
3. Many people (and drs.) will mention that figure of AI "reducing your risk by 53%." If that no.'s accurate, be aware of this. That's 53% of your RISK of recurrence, NOT a 53% chance you'll get cancer again. Often misunderstood (and good to scare you into AIs). So for example, if your survival odds are 97%, the AI's impact is 1.59% (53% of 3%). Of course, if you have a scary-high risk of recurrence, you may well calculate that every bit of additional help is worth the price you may need to pay. But again, just be sure you're an informed patient.
4. Finally, there's a LOT of legit research going on around other natural forms of aromatase inhibition (the function that makes estrogen in your body). Some foods (top are button mushrooms, cruciferous veggies (ex., broccoli), fermented foods, MANY more easily found online) in addition to the impact of a high fiber diet and exercise to inhibit aromatase production. Actual research you can look up to help women who can't (or don't want to) tolerate AIs. Is it the same as an AI med? Likely not, but you can sure have a big impact if you decide not to go the AI path.
I hope this is useful for anyone here. Appreciate everybody in the conversation. Kelly