Aromatase Inhibitors: Did you decide to go on them or not?

How are you doing?

Thanks. Found it! Have you watched Paul Stamets (YouTube) presentations on Turkey Tail Mushrooms (TTM) and their healing potential for breast cancer? Granted, we each must make our own choices and I certainly do NOT advocate for anyone to take supplemental non-prescribed herbs without first consulting your doctor. Let me also be clear that I've been including TTM ALONG WITH the bilateral lumpectomies, the radiation treatments, and, now, daily Letrozole.

I ordered the turkey tail mushroom on Amazon. I'm excited about giving it a try!

I had asked my Mayo oncologist to draw my baseline estradiol and estrone levels before starting hormonal drugs. I was told that this was not indicated. Having been on Exemestane for past 8 months with side effects I again asked if these levels could be drawn. I again was told no and was lead to believe that the current commercial test available for these levels was not accurate. This drug has been found to be efficacious at many levels. 25mg was dosage settled on. The issue is that none of us are the same size, age Nor do we all have the same medical issues. Lower doses have fewer side effects. What may be the correct dosage for me may be different for someone else. But the mantra is the adult medical world seems to be one size fits all. The other disappointment for me is that I would have expected to be given a questionnaire about the side effects since 40 to 50 percent of women quit therapy. Survey would include joint, gastrointestinal, estrogen loss (hair loss, brain fog, vaginal dryness, beard formation) , mental health (depression, anxiety, insomnia, suicidal thoughts), high blood pressure, change in lipid profile, and quality of life each time I saw the oncologist. I use to fill out surveys like this regarding the health of my children before the pediatrician stepped in. It allowed us to focus our discussion. Also, it would provide data to let women know if your this age, or this BMI, or have or do not have your ovaries, or are premenopausal or post menopausal you are at risk for certain side effects. I am a small person and I feel like I am being overdosed.

Finally, I and six of my friends and colleagues have been diagnosed with breast cancer this past year. We all have had surgery, radiation, and chemotherapy. WE are now all on hormonal treatment. WE are not the same age, same tumor, or same medically, but everyone of us has experienced side effects. By nature I think most women do not complain or quit therapy, but would really like someone to listen and to find or offer solutions for these effects that can effect quality of life. Happy Thanksgiving to All!!

Cedar You said everything I have been saying and asking. I am also very petitie and was always highly sensitive to any medications.
I was put on Anastrazole 1mg in 2019. Left breast mastectomy. Chemo. Radiation. I am also small and feel like I am being overdosed and have asked about going off or taking half. Suddenly I have issue rising in areas that I never had issues. GI, thyroid, anxiety, depression, sleeplessness, rapid heart rate....etc. They are ready with a drug or scan fo every symptom, but will not hear of checking estrogen levels or alternate therapies. It makes no sense that there is a one size fits all to this. My question to you......why are you choosing to continue to take the hormone therapy? I only ask because I am seriously considering stopping it and trying only natural treatments. The anxiety alone of every side effect and every scan I get because I mention the side effect is debilitating. And, of course, the answer to that has been cymbalta. I don't want more medications and more side effects to consider. Each one leads to another issue.

I agree with all of your thoughts. I wish I could have tolerated the letrozole. It was my last hope for a prescribed AI. I really am not advocating anyone follow my new wholistic treatment regimen.

Do you mind if I ask what state you live in? We moved to AZ one month prior to my BC diagnosis (Prescott AZ) and there are so many people who have moved here in such a short period of time that the Oncologists are so slammed I can't get any information or help. I just get the prescription and no dialogue or help at all. I've tried reaching out to Mayo several times, can't get through on appt line, they sent me an email today saying they have tried to reach me by phone but I haven't received any calls from Mayo or any messages so I wonder if the whole system is just so stretched that I'm SOL or if it's my situation that's just really bad?

I have watched them and that was early in my cancer journey in January/February. Very impressive what he accomplished for his mom.

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I use a patient portal to send and receive messages. Have you tried that?