How important is taking hormone blockers after surgery for IDC?

Posted by cadunkin @cadunkin, Sep 5, 2022

I’m 71 & diagnosed with IDC. The tumor was very small, clean margins & no lymph node involvement. After much research & discussion with my oncologist I am leaning toward 3 weeks of radiation & no hormone blocking drugs. I understand that there is more risk of cancer returning, but the difference in that risk doesn’t seem worth the side effects of the drugs. It’s important to me to remain active so the bone loss, joint pain & fatigue would greatly affect my quality of life. I would greatly appreciate all discussion on others that have made this decision & how they are doing. All of it is scary! Thanks much everyone.

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I'm 71, my breast cancer was about half an inch, but I did have one node in my sentinel gland that was positive. All margins clear on both. I'm debating whether I want to do hormone suppressants also. I did do 18 radiation treatments. We're relatively young, so my pharmacist told me. But statistics do not show that it's worth it even for me to do the spent. My Oncologist told me that if I hadn't had the cancer in the lymph node, she wouldn't recommend the suppressant, but it's iffie since I did.

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I’ve been on a “no drugs” path since October. My oncologist told me to take off through the holidays. My next appt is in Jan where he said we’ll revisit my situation. I’m pretty certain I will not try any more inhibitor drugs. My 3rd option side effects include endometrial bleeding (no thanks) and the option after that is Tamoxifen (which I don’t want to take either). As stated, the effects these drugs have on my body outweigh their benefit for me.
As always, these are my feelings about my treatment & recovery, and aren’t not meant to be advice for anyone else, to all of whom I send heartfelt prayers on their journey to wellness. 💕🙏

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@madeler22

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.

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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.

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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!

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

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@madeler22

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.

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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.

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@windyshores

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.

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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.

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@madeler22

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.

Jump to this post

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.

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@windyshores

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

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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.

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@windyshores

Lobular can be harder to find with a breast exam because it may not present as a lump, from what I have been told. Check with a doc you can find that you trust.

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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.

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