Looking for research re: taking AI drugs vs not taking them

@brightlight66 it's called Predict Breast cancer. When I took the "test" it showed no difference when I put in using AI and not using AI. You have to have all your info from the biopsy and surgery to fill it out. I had to get out the paperwork from my biopsy and surgery to fill out the form so it was more exact with it's prediction. I was on anastrozole and couldn't handle the side effects. I tried it 3 different times within a 3 month period and each time I got different side effects. First it was pain in my joints and muscles that was terrible,, I couldn't lift my right arm above my shoulder and the fatigue was off the charts. The second time I added a few things I saw on another site like tart cherry for the joint pain and claratin and took them all at night thinking the fatigue wouldn't be as bad, but I was wrong. The third time I had all the previous symptoms and a new one, depression and terrible mood swings. They wanted me to go on tamoxifen and the symptoms are basically the same with an added risk of ovarian or uterine cancer. I just can't justify trading one cancer for the risk of another. Besides that I am on antidepressants and that cuts the effectiveness of the tamoxifen in half so what is the point.

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

@kcalhoun You are simply the best.. as someone who has researched too I agree with all your points.. I even read somewhere and I have to find it of use of grape seed extract as an inhibitor.. and it amazes me that no one ever looks at weight loss.AIs make some people gain weight which is strange as weight increases aromataise.

@brightlight66 it's called Predict Breast cancer. When I took the "test" it showed no difference when I put in using AI and not using AI. You have to have all your info from the biopsy and surgery to fill it out. I had to get out the paperwork from my biopsy and surgery to fill out the form so it was more exact with it's prediction. I was on anastrozole and couldn't handle the side effects. I tried it 3 different times within a 3 month period and each time I got different side effects. First it was pain in my joints and muscles that was terrible,, I couldn't lift my right arm above my shoulder and the fatigue was off the charts. The second time I added a few things I saw on another site like tart cherry for the joint pain and claratin and took them all at night thinking the fatigue wouldn't be as bad, but I was wrong. The third time I had all the previous symptoms and a new one, depression and terrible mood swings. They wanted me to go on tamoxifen and the symptoms are basically the same with an added risk of ovarian or uterine cancer. I just can't justify trading one cancer for the risk of another. Besides that I am on antidepressants and that cuts the effectiveness of the tamoxifen in half so what is the point.

@kathyfio Thanks for telling me about the Predict Breast Cancer test. My score says that adding AIs only increases my survival by very little. It's not worth feeling miserable for 5-10 years.

@brightlight66 Would this test be the same as the Oncotype dx test? Mine said chemo would have no affect on me, and if I took AIs it would bring my reoccurance rate to 3% and if I didn't take AIs I would be at 6% reoccurance.

@brightlight66 Would this test be the same as the Oncotype dx test? Mine said chemo would have no affect on me, and if I took AIs it would bring my reoccurance rate to 3% and if I didn't take AIs I would be at 6% reoccurance.

@dlardin No, this was the Predict Breast Tool Online. I didn't do Oncotype Dx test as my oncologist said it's only to see if I needed chemo and he said that I did.
Once you fill out all the information...you can put in whatever you've done such as chemo and radiation and tumor size, etc. You can look at taking Zero AIs, 5 year AIs or 10 year AIs to see if it makes any difference.
Two things: Take the UPDATED test here.
https://breast.v3.predict.cam/tool
Then after adding in all information, it says 'Try removing treatments to see the effect it has on survival" in smaller print on bottom right and click on the text. You can add Zero AI or 5 year AI or 10 year AI to see how much of a difference it makes on survival. It's more about survival than recurrence.

@prc73 Ooooh so true. (Never heard of the grape seed extract, but I'm sure it's easy enough to do some research to make sure it's legit.)
I had to stop and write back because of your reference to weight. You can't go anywhere and not see how fat builds estrogen levels, the very thing you're taking the AI to kill. And yes, for a lot of women, the AI ironically adds weight.
I was about 40 pounds overweight and have never successfully taken or kept it off (with decades of trying). One thing I did (cuz hey, it's beneficial regardless) is I went on a GLP-1 (the Lilly program for no-insurance pricing for Zepbound, which apparently gets better fat loss than others). BUT, to do it, you need to do a TON of research and understand what you're getting into. It's not a magic shot that drops weight. It suppresses your hunger to help YOU get the weight off. If you want to KEEP it off, you need to change your lifestyle, with healthier eating, movement, etc. Otherwise, same behavior, same result.
After 5 months, I'm down 30 pounds - feels AWESOME. It'll take some work to get to my target, but I know I'll get there. I figure my body without all that excess fat stands a better chance against "the enemy." Hope this is helpful. THANKS for sharing a great post, @prc73 ! < 3