How important is taking hormone blockers after surgery for IDC?

Almost same scenario. Started with Anastrozole. After 4 months, I was in such joint pain I had to stop. Took a month off, then started Letrozole. Two months in, my joints, though less sore, were barely noticeable because my hormones were so whacked out. I’ll be 69 in December and I felt like I had traveled back in time to peri-menopause. Sleep deprived, moody (mostly sad), crying for no reason - you get the drift. So I stopped after 2 months and told my oncologist that my quality of life was too important to me. These drugs are all about recurrence for cancers that are cured, and the percentages are low. I’ve been given a 3 month reprieve without inhibitors and we’ll re-access and discuss options on Jan 3rd 2023. I’m pretty sure that I’ll decline another drug, especially since they can’t tell me precisely how the drugs are helping with blocking estrogen production, which bloodwork doesn’t show.
Good luck to you & I’m sure you’ll decide what’s best for you in your journey. 🙏💕

@madeler22 so your blood tests showed a detectable level of estradiol while on an aromatase inhibitor?

Since I had both breasts removed, I'm still confused about how a recurrance would be detected. I will have to try to ask that question again. The surgical scar along my chest has some scar tissue from an infection after surgery, so palpation seems an exercise to help me feel that there is some screening. Thank you for your suggestions. An Ob/Gyn is a very good idea. Maybe a Nurse Practitioner. I've always had good luck with them.

No, that’s my problem with the inhibitors. I asked my oncologist on the first 4 month checkup after starting the drug. When he told me that my bloodwork looked good, I asked, “does it show you the estrogen levels?” He said, “No, we just look for indicators in blood levels relative to cancer.”
That being said, why aren’t we getting a report on how effective the drug is working to block estrogen production? That’s supposed to be the goal, but apparently bloodwork doesn’t show that. That’s why I’m frustrated with taking the inhibitor drugs, especially when I’m cancer free, but feel so lousy.

I responded to this question previously so apologies for repeating. Look up the insert for Femara, as an example. Twenty percent of the dose reduced estradiol below detectable levels. I would think there have been many studies on this. I know I felt comfortable assuming that estrogen from my adrenals was eliminated, which is what AI's do.

I’d be curious to know that if that’s the case why we can’t be tested for that. I only am required to get my blood drawn within a week prior to a follow up appointment.

It is possible it is not covered by insurance-? You could request the test and pay. The point I was trying to make is that it would seem (ask your doc) that studies may have shown there is no need for testing hormone levels. Insurance coverage might also be an issue.

@callalloo Thank you for your knowledge and detailed answers. Did you take any hormonal treatment?

Same scenario for me. I am 65. After 8 weeks of Letrazole and to a point where I could barely get out of bed and physically function, I messaged my drs and decided to take a four week break. At four weeks, I was starting to recover, but still felt awful. Discussed with the breast clinic and she said it is your choice if you want to continue. With. 3% chance of cancer return, I have decided I will deal with cancer if it returns. I can’t lay around the rest of my life saying oh this is keeping me cancer free when my heart, bones, joints and everything else is deteriorating. You have my best wishes and prayers for a cancer free rest of your life!

I asked the oncologist if they do blood work to test levels of estrogen before they begin the anti-estrogen drugs, because a woman 2 years into menopause has more estrogen in her system than a woman like me 22 years into menopause - she said no, they just give the same dose to every woman, no matter (if they even know/test) what her estrogen levels are - I am not taking the drugs, but told her I wanted her to test my estrogen levels - "below detectable levels" was the result, so basically virtually no estrogen - she told me the drugs would provide 97% protection against a reoccurrence and without them it would be 90% protection. This was based on my Oncotype score and my tumor size, etc. My quality of life is more important so no drugs for me.