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

My doctor loves the word “empiric/empirically”. They empirically know the AI’s work, they empirically give AI’s to all breast cancer patients, the empiric fuse is 1 mg of Anastrazole even though they don’t do blood work to monitor you. I have her a big NO THANK YOU to the AI’s. No one is giving me a med that they cannot prove that I need and cannot prove is or isn’t working. There is a blood test to check your estrogen level lower that 5 but they won’t order it.

My 70 year old friend got breast cancer 27 years ago. She had a single mastectomy and refused the AI. It just came back in the other breast but it took 27 years. She is extremely glad that she didn’t take an AI. She lives with no regrets.

There is a real need for more research into the lived experience of people taking AIs. Let’s hope there are some researchers out there who will take this on.

I tend to be like you, want to hear the evidence. I do a lot of research and have found things they didn't bother to tell me, or research. The biggest was that women with cardiovascular issues (mine was hypertension) shouldn't take an IA. I did for 4 months and got "Labile Hypertension," unpredictable, huge spikes and lows, still plaguing me. I feel like I gave up heart health for this experiment.
Patty

We have to take charge of our own treatment/no treatment. Good for you. I have changed oncologists and saw the new one last week. He's great!! And the patient portal is current and I find that comforting. It even gives his email address, a first for me with any of my doctors over my 86 years of life. Good luck. Sending good karma your way.

I am a very active 65 year old with good bones and not overweight. Diagnosed with IDC - stage 1 with a grade 1 tumor. Had 6 rounds of chemo, a double mastectomy and am currently going thru additional 14 rounds of Herceptin because I was triple positive. Doc wants me on an AI for 5 years but computer program shows it helping me with a recurrence by a whopping 1.6%. It doesn't make sense to me to take such a debilitating med that will cripple me for 1.6% more of protection. My doc seems to be in agreement with my logic but continues to push AI. What am I missing in her argument?

In my humble opinion, what you are missing is actual communication with your doctor.
In this digital age of everything happens in an instant, and conversation doesn’t really happen, this is further exacerbated by overbooked and overburdened doctors offices.
It seems as if they are pretty much giving you everything from soup to nuts in your treatment. This makes sense since there are multiple ways to target this cancer. If this is true, I might ask why, it might be that there is something in your cancer that is a little worrying.
I took a boatload of endocrine therapy and I don’t view as debilitating.
I am not crippled in any way. Yes there are some arthritis issues but I am have always been very active and it would be expected. I am still very active and ride horses and take care of my property.
My thoughts are that I would not risk going through all of that again, not even by 1.6% based on someone else’s experience with a drug.
Did you talk to your oncology team about this worry?

Yes, I have spoken with my oncologist about my concerns. She agrees that 1.6% isn't a huge benefit. I'm looking at it from a cost-benefit analysis and the cons outweigh the pros.

I don't think you are missing anything in her argument; other than AI is what we currently have for treatment - and recommend. All the drugs recommended, or in use, have gone through clinical trials and deemed safe for use by our Food and Drug Administration (FDA) - BUT we don't have full data on long term effects for 10-20 years out from initial use. So folks, we are de-facto building new information for the next generation of BC patients as we go through our individual journeys. I am grateful for the survivors ahead of me because their info helps me make an informed decision about choices (drugs, treatment plans, BMX or not). BC is so individualized, and LCIS being only 10-15% of BC, so under-studied we are almost shooting in the dark about what type of effects any treatment will have on our overall physical, and mental, health.

It is a good thing you did a deep dive and found AI drops occurrence by whopping (LOL) 1.6%. I agree with you that that is not much for any associated future side-effects. The 1.6% is probably an average which means some people had a lower probability of recurrence and others had a higher. Nonetheless, at 1.6% I would probably decline and live my best life without continued treatment.

BUT keep in mind that the computer program used (or software calc ran), or any research article you read on longterm prognosis and effects of a drug, is only one of probably several. There could be differences in averages, or percentages, reported because each research project (even if on the same topic) has a different pool of persons/patients participating; and this will shift rates/percentages of recurrence, etc. reported between projects. So one research article, or software program (this to has a margin of error because the program was feed data generated by one, or possibly several, research projects) is not enough to make any decision. There is not typically a wide range of difference between data sets and possible outcomes...otherwise the drug would not be approved by FDA for use. But there is always individual responses to any drug that may or may not contribute to larger issues down the line.

You could look for another software package to run your individual risk for recurrence - or do a deeper dive into research on AI and longterm effects. OR if this is the software of choice believe the stats, know for some recurrence is higher and others lower, and go from there. But you're right 1.6% reduction is not much...and maybe not worth the risk for possible side effects - debilitating or not! Good luck with the decision process...