1. < Breast Cancer

Letrozole and checking estrogen levels

Posted by 2r3b @2r3b, Sep 3, 2022

I have been taking Letrozole for 6 months. Is there a test (ideally a test that is sensitive and can indicate if the AI is actually working) that can check my estrogen levels? The only Estradiol test I have had was one that was checked just to confirm "menopausal status" a few months after removal of ovaries. However, this test was not very sensitive as it was not sent to a special lab and the results were received in just a few hours. I would have anticipated a lower number, but my Oncologist indicated that it was not a very sensitive assay. I would just like another potential test option that is more sensitive/comprehensive if possible.

Thank you for any thoughts!

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Mazin-Grace | @mazingrace | Aug 5 10:48am
In reply to @24faith "Hello. You're right to be perplexed as you struggle for acceptance of your findings on the..." + (show)
@24faith

Hello. You're right to be perplexed as you struggle for acceptance of your findings on the mammogram. A second opinion and maybe an additional test like a contrast mammogram could be a step in the right direction for peace of mind. I'm a newly at taking letrozole myself. What happened w my body's reaction to it is very encouraging to me. In the month between the biopsy (and finding the biology of the cancer to be ER+) and the lumpectomy, the cells of the cancer already showed a positive response. I'm encouraged to continue it. My baseline lipid panel and dexa scan will help us monitor any neg effects on these issues and I'll work w the oncologist if things come up. Peace on your fact finding.

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I have other health conditions that the side effects of letrozole can cause life threatening situation with me…. as told to me by a pharmacist. The doc denies that letrozole gives these side effects but my money is on the pharmacist.

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dlmdinia | @dlmdinia | Aug 5 11:01am
In reply to @mazingrace "I’m stage ZERO and have absolutely no measure of even the tinniest of lump to be..." + (show)
@mazingrace

I’m stage ZERO and have absolutely no measure of even the tinniest of lump to be felt. I had (obviously) NO LYMPH INVOLVEMENT.

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Even without a visible lump there may be cancer cells lurking. You're very lucky to have caught it so early. The Letrozole or Anastrozole is to prevent new or present cells from developing further. Most people on this forum are here because they've had issues while there are very few representing a very large number of people with little or no side effects. You may tolerate it, you may not. It's totally your choice whether or not to take the gamble. Many people in your position choose to go on the drug for peace of mind. Others don't. You are here for others' experiences, but it seems you are denigrating mine because it's not what you want to hear. I'll chalk it up to the emotional roller-coaster you're on now. We've all been there. Good luck.

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1 reply
Mazin-Grace | @mazingrace | Aug 5 11:10am
In reply to @dlmdinia "Even without a visible lump there may be cancer cells lurking. You're very lucky to have..." + (show)
@dlmdinia

Even without a visible lump there may be cancer cells lurking. You're very lucky to have caught it so early. The Letrozole or Anastrozole is to prevent new or present cells from developing further. Most people on this forum are here because they've had issues while there are very few representing a very large number of people with little or no side effects. You may tolerate it, you may not. It's totally your choice whether or not to take the gamble. Many people in your position choose to go on the drug for peace of mind. Others don't. You are here for others' experiences, but it seems you are denigrating mine because it's not what you want to hear. I'll chalk it up to the emotional roller-coaster you're on now. We've all been there. Good luck.

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My apologies to you. I do not mean to demean you or anyone. I’m just frustrated and don’t feel heard nor respected by the docs. I only wish you well and good health!!!

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Aug 5 9:04pm

Trying to get this thread back on track a bit. All of these hormone therapies are a cost vs benefit choice for each person. There is some possible side effects, but there are thousands of women who take these pills every day without issue. There are also women who have varying degrees of side effects, and some of those women do well on a different therapy.
I hope as a cancer patients who has taken 2 different therapies, for a total of 15 years that I can be encouraging to all other patients. I do understand that it isn’t always easy, but I do feel it has always been worth it.
@mazingrace have you made an appointment for a second opinion, and or asked your cardiologist if this is a reasonable treatment for you?

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cherziggy | @cherziggy | Aug 6 6:03am
In reply to @mazingrace "Hi I’m new here. I’m 71 female with DCIS spot on my left breast. Supposedly my..." + (show)
@mazingrace

Hi I’m new here. I’m 71 female with DCIS spot on my left breast. Supposedly my spot is ER+ so my oncologist started me on letrozole. Seems like we are putting out a match with the wind of a tornado. Estradiol level was 19 as post menopausal level would be. I doubt a more stringent test was performed for estradiol level. The stage of my spot is ZERO per biopsy. The spot is so small I suspect the actual biopsy removed the entire spot.

I have an uneasy feeling of this entire protocol. In the beginning I remember the tech doing my mammogram and she actually did not fully place my left breast on the shelf of the machine. It was a sloppy test in my opinion. And of course that is the supposedly side of the my spot of cancer. Im not at a facility recognized by NIH as cancer treatment center. I’m very very Leary of taking letrozole and told my oncologist with my health condition this medicine seems to be counter intuitive for life sustaining care. He said there’s no issue with heart nor chance of blood clot. I’m heading out for second opinion.

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My experience with letrozole was not good. I took it for 3 weeks after radiation in August 2023.
In that 3 weeks the chemicals in the letrozole destroyed the ulnar nerve in both arms. I ended up having bilateral carpel and cubital tunnel surgery. First surgery on right arm 12/23, left arm 1/24. After fully healing until April my oncologist started anastrozole. It caused my pain to return and terrible brain fog so my oncologist took me off for a break until my pain was better.
Just yesterday I started exmestane. I’m really Leary of what this AI will do to my body?
I’m 70 and 11 mos out after radiation. I haven’t been able to take any AI meds regularly since. Hopefully the third AI will work for me. I’m terrified to take it and at the same time terrified not to take it!
I was diagnosed at 69 April of 2023. Her+ stage 1 with lumpectomy and reconstruction. My mammaprint was ultra low. Mammogram 8 mos before diagnosis was negative. I insisted on a mri based on my intuition and thank goodness I didn’t trust the Mammo!

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1 reply
windyshores | @windyshores | Aug 6 7:30am
In reply to @cherziggy "My experience with letrozole was not good. I took it for 3 weeks after radiation in..." + (show)
@cherziggy

My experience with letrozole was not good. I took it for 3 weeks after radiation in August 2023.
In that 3 weeks the chemicals in the letrozole destroyed the ulnar nerve in both arms. I ended up having bilateral carpel and cubital tunnel surgery. First surgery on right arm 12/23, left arm 1/24. After fully healing until April my oncologist started anastrozole. It caused my pain to return and terrible brain fog so my oncologist took me off for a break until my pain was better.
Just yesterday I started exmestane. I’m really Leary of what this AI will do to my body?
I’m 70 and 11 mos out after radiation. I haven’t been able to take any AI meds regularly since. Hopefully the third AI will work for me. I’m terrified to take it and at the same time terrified not to take it!
I was diagnosed at 69 April of 2023. Her+ stage 1 with lumpectomy and reconstruction. My mammaprint was ultra low. Mammogram 8 mos before diagnosis was negative. I insisted on a mri based on my intuition and thank goodness I didn’t trust the Mammo!

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@cherziggy are you taking medication(s) for the HER2+?

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cherziggy | @cherziggy | Aug 6 9:37am
In reply to @windyshores "@cherziggy are you taking medication(s) for the HER2+?" + (show)
@windyshores

@cherziggy are you taking medication(s) for the HER2+?

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Yes, I’m just started the third AI.

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Jane W. | @ladyofthelake1 | Aug 7 2:56pm
In reply to @pampurr "Lextrozole is killing my joints. I am looking for a new oncologist as soon as my..." + (show)
@pampurr

Lextrozole is killing my joints. I am looking for a new oncologist as soon as my Medicare kicks in.

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Maybe try a different brand. I am now on Letrozole By Aurobindo.
(Some ankle and wrist aches, light headache sometimes but no fog so far) Prior to that was Letrozole by Accord 30 days - had chest pains, ankle and wrist pains, fog, and other aches and pains. Originally started mid May 24 with Anastrozile,very bad joint pain, couldn’t even walk. Lots of fog. Shocked me.

They all suck! Just finding the right one that works. Is there a more natural one w/o side effects?

Jane

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Jane W. | @ladyofthelake1 | Aug 7 3:08pm
In reply to @cherziggy "I was diagnosed in April with the same only left breast. I’m also 69. Always healthy..." + (show)
@cherziggy

I was diagnosed in April with the same only left breast. I’m also 69. Always healthy until now. My lumpectomy was 2 weeks ago with one sentinel node removed. I’m still confused about why she only removed one. It contained isolated cancer cells. Now the plan is to radiate my breast and the lower lymph nodes. My prescription for the Letrozole is ready at the pharmacy. I’m on the fence about putting this in my body. I’m not on any big pharma meds now or before. My Breast Oncologist says it’s better than cancer???
I’ve been researching on my own. I’ve learned so much reading this blog. Thank you for the information I wish you the best!

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My cancer might be similar or not. I am left breast lumpectomy stage 1b (two lymph nodes removed, one positive and one negative) taking Letrozole by Aurobindo. So far so good. Will see. I hate them all. Was on Accord brand month prior. If you hear of a natural method, please let me know what works and is proven success.

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windyshores | @windyshores | Aug 7 3:58pm

I always wonder if side effects from a natural method would be the same, if they are effective in reducing estrogen levels enough. The side effects from AI's are from reduced estrogen (below detectable levels) so if "natural methods" did that wouldn't we have the same side effects ?

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