Should I not be taking hormone inhibitors after mastectomy?

Posted by lindaloon @lindaloon, 4 days ago

I am 64. I was diagnosed DCIS Grade 3 and had mastectomy on Dec. 2024. Two lymph nodes removed, clear. ER+ 90% and PR-. On my visit two weeks after the surgery, my oncologist said I don’t need further treatment like taking hormone inhibitors ( endocrine therapy) like other ER positive patients do. He said the newest study shows the benefits of endocrine therapy is about the same as not having any. He said I can think about it. What should I do? Any of you have the same decision to make? Thank you very much!

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My first guess is that he ran some of the newer tests that help determine if it would be helpful or not. Also, if you were already post menopausal that might help guide his decision as well. The good news is that everyone who is er+ does not have to take endocrine therapy anymore.
If you are unsure about this, you should ask your doctor what guided this decision. It will either reassure you that he is helping you to make the best decisions or you will still wonder and maybe you could ask him for the test to help you decide.
Are you comfortable asking these questions of your oncologist?

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@auntieoakley

My first guess is that he ran some of the newer tests that help determine if it would be helpful or not. Also, if you were already post menopausal that might help guide his decision as well. The good news is that everyone who is er+ does not have to take endocrine therapy anymore.
If you are unsure about this, you should ask your doctor what guided this decision. It will either reassure you that he is helping you to make the best decisions or you will still wonder and maybe you could ask him for the test to help you decide.
Are you comfortable asking these questions of your oncologist?

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Thank you so much for the reply. My oncologist showed me an article on his screen about this new study but I didn’t read it. I will message him and ask him to send the article to me. And go from there.

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@lindaloon I wonder if this has to do with your negative PR (progesterone). With grade 3 I am surprised and am going to look this study up! Did you hvae an Oncotype Dx that gave your numbers on benefit from meds (tamoxifen was used, but AI's apply)? Yes please share a link if you can.

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I don’t have Oncotype Dx. I don’t know what’s that. I will look up. Thank you for the reply.

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Following. Please post link to study.

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Your Oncotype score can determine the likely hood of recurrence….The score is based on the analyzes of the genes in the breast cancer tissue….helps determine what kind of treatments would be most beneficial. My score was 22 indicating AI would decrease my chance of recurrence to 8%. Chemotherapy would not be necessary in my case. Ask your Oncologist for those results!! Sending you positive vibes🙏🤟❤️

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@auntieoakley

My first guess is that he ran some of the newer tests that help determine if it would be helpful or not. Also, if you were already post menopausal that might help guide his decision as well. The good news is that everyone who is er+ does not have to take endocrine therapy anymore.
If you are unsure about this, you should ask your doctor what guided this decision. It will either reassure you that he is helping you to make the best decisions or you will still wonder and maybe you could ask him for the test to help you decide.
Are you comfortable asking these questions of your oncologist?

Jump to this post

@auntieoakley what "newer tests" are you referring to? Are there new tests that sometimes show that a hormonal cancer does not need an AI or tamoxifen?

The Oncotype, as I remember, always shows some statistics for benefit from hormonal treatment. The Breast Cancer Index may show no extended benefit after 5 yeas, but that is done only after 5 years to hormonal meds.

My breast cancer was 10 years ago but I have friends deciding. I may not be up on the newer testing that @auntieoakley refers to. Details please!

This thread needs actual evidence/links, because this would be a very important development for many. But I cannot find any study that resembles what @lindaloon's doctor showed her.

I fear that even without evidence, people will read this and decide not to take hormonal meds. Perhaps @lindaloon could help us by asking the doctor for specifics and/or sharing the link with us. Until then I am skeptical out of an abundance of caution and hope others are too.

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@windyshores

@auntieoakley what "newer tests" are you referring to? Are there new tests that sometimes show that a hormonal cancer does not need an AI or tamoxifen?

The Oncotype, as I remember, always shows some statistics for benefit from hormonal treatment. The Breast Cancer Index may show no extended benefit after 5 yeas, but that is done only after 5 years to hormonal meds.

My breast cancer was 10 years ago but I have friends deciding. I may not be up on the newer testing that @auntieoakley refers to. Details please!

This thread needs actual evidence/links, because this would be a very important development for many. But I cannot find any study that resembles what @lindaloon's doctor showed her.

I fear that even without evidence, people will read this and decide not to take hormonal meds. Perhaps @lindaloon could help us by asking the doctor for specifics and/or sharing the link with us. Until then I am skeptical out of an abundance of caution and hope others are too.

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To me those are newer tests. lol 😂
You are the testing information lady. My original cancer diagnosis was over 20 years ago and none of the tests you talk about (onco dx, breast cancer index, mammo print, etc.) were even thought of.
These are the tests I referred to above. I know they are trying to develop more testing and are doing studies to look at this, but for now, this is the best we have and it is certainly a long way from a few short decades ago.
Twenty years ago, almost everyone got chemo, they had tamoxifen, and Arimidex was a brand new drug, all the others came after that.
You should know I would never promote the idea that people go against medical advice. I took tamoxifen for five and Arimidex/anastrozole for ten years. I believe any side effects that I dealt with are worth the time I have had with my family.

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@auntieoakley

To me those are newer tests. lol 😂
You are the testing information lady. My original cancer diagnosis was over 20 years ago and none of the tests you talk about (onco dx, breast cancer index, mammo print, etc.) were even thought of.
These are the tests I referred to above. I know they are trying to develop more testing and are doing studies to look at this, but for now, this is the best we have and it is certainly a long way from a few short decades ago.
Twenty years ago, almost everyone got chemo, they had tamoxifen, and Arimidex was a brand new drug, all the others came after that.
You should know I would never promote the idea that people go against medical advice. I took tamoxifen for five and Arimidex/anastrozole for ten years. I believe any side effects that I dealt with are worth the time I have had with my family.

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I had an Oncotype 10 years ago and was not aware of any recommendation there to no take meds. It might give a relatively low benefit for some, but it never said meds were not needed. (I was aware that I was lucky to have the Oncotype because only a few years earlier I would have had chemo.)

If @lindaloon can provide more info on what the MD showed her, it would be helpful, but if dealing with cancer now there may be more important things to focus on!

REPLY
@windyshores

@auntieoakley what "newer tests" are you referring to? Are there new tests that sometimes show that a hormonal cancer does not need an AI or tamoxifen?

The Oncotype, as I remember, always shows some statistics for benefit from hormonal treatment. The Breast Cancer Index may show no extended benefit after 5 yeas, but that is done only after 5 years to hormonal meds.

My breast cancer was 10 years ago but I have friends deciding. I may not be up on the newer testing that @auntieoakley refers to. Details please!

This thread needs actual evidence/links, because this would be a very important development for many. But I cannot find any study that resembles what @lindaloon's doctor showed her.

I fear that even without evidence, people will read this and decide not to take hormonal meds. Perhaps @lindaloon could help us by asking the doctor for specifics and/or sharing the link with us. Until then I am skeptical out of an abundance of caution and hope others are too.

Jump to this post

Thank you so much! I messaged my oncologist and this is his reply:
“What I showed you was a website for the National Comprehensive Cancer Network. (http://www.nccn.org) You need to register to be able to use it, but you should be able to bring up the section on breast cancer where there are flow charts. There is a long section at the end which you can read that discusses the recommendations in more detail.”

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