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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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windyshores | @windyshores | 3 days ago
In reply to @lindaloon "Thank you so much! I messaged my oncologist and this is his reply: “What I showed..." + (show)
@lindaloon

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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Thank you so much for going to that effort @lindaloon. The NCCN site is very useful for all of us (I used it 10 years ago).

I think that the fact that you have DCIS accounts for your doctor saying your endocrine therapy is optional. (Sorry I missed the DCIS in your first post!)

There is an Oncotype test for DCIS that would give you risk of recurrence and a number for benefit from hormonal meds. That info might be helpful.

ps For invasive cancer, the guidelines are clear:
Targeted Therapy
All patients with HR-positive IBC are recommended to receive endocrine
therapy sequentially after completing the planned preoperative systemic
therapy.

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1 reply
lindaloon | @lindaloon | 2 days ago
In reply to @windyshores "Thank you so much for going to that effort @lindaloon. The NCCN site is very useful..." + (show)
@windyshores

Thank you so much for going to that effort @lindaloon. The NCCN site is very useful for all of us (I used it 10 years ago).

I think that the fact that you have DCIS accounts for your doctor saying your endocrine therapy is optional. (Sorry I missed the DCIS in your first post!)

There is an Oncotype test for DCIS that would give you risk of recurrence and a number for benefit from hormonal meds. That info might be helpful.

ps For invasive cancer, the guidelines are clear:
Targeted Therapy
All patients with HR-positive IBC are recommended to receive endocrine
therapy sequentially after completing the planned preoperative systemic
therapy.

Jump to this post

Thank you so much! Your reply helped a lot! I will ask my doctor to give me
an Oncotype test. You made me feel a lot relaxed! Thank you so much!

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1 reply
lindaloon | @lindaloon | 2 days ago
In reply to @auntieoakley "To me those are newer tests. lol 😂 You are the testing information lady. My original..." + (show)
@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 totally agree with you! Thank you so much!

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srkellen | @srkellen | 2 days ago

The Oncotype test is done in breast tissue that has been removed. The tissue is sent to a lab in CA. It’s the only lab that can do it…and it takes 4 weeks to get results. Maybe ur Dr already had tissue sent and the results aren’t back yet….Good luck in finding the answers!

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1 reply
kathyomaha55 | @kathyomaha55 | 1 day ago

I was diagnosed at 62, I had IDC with lumpectomy & radiation, stage 1, grade 3. My Oncotype was 22, so no chemo. But I did take AI drugs for 5 years. I refused to take them for an additional 5 years. My doctors told me the AI drugs cuts your reoccurrence by 50%. So if you change of reoccurrence is 10% - then it drops to just 5%. Each person has to decide for themselves, and I decided I wanted to lower my risk and take the drugs. Some people have no side effects & some have bad ones. I changed drugs one time, a year into treatment. What was important to me was trusting my tumor board (all the doctors) with the recommended treatment. Good luck.

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lindaloon | @lindaloon | 1 day ago

Thank you for your reply. I now decided to take medication.

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1 reply
lindaloon | @lindaloon | 1 day ago
In reply to @srkellen "The Oncotype test is done in breast tissue that has been removed. The tissue is sent..." + (show)
@srkellen

The Oncotype test is done in breast tissue that has been removed. The tissue is sent to a lab in CA. It’s the only lab that can do it…and it takes 4 weeks to get results. Maybe ur Dr already had tissue sent and the results aren’t back yet….Good luck in finding the answers!

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It’s good to know that! Thank you very much.

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windyshores | @windyshores | 1 day ago
In reply to @lindaloon "Thank you for your reply. I now decided to take medication." + (show)
@lindaloon

Thank you for your reply. I now decided to take medication.

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@lindaloon you do not need to compare your DCIS with IDC, which is invasive. Your cancer was confined to the ducts. An Oncotype specifically for DCIS could give you enough information to make a decision. MY grade e IDC needed meds even with a low Oncotype.

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