Why are dosages for estrogen suppression drugs one-size-fits-all?

Posted by gldilli @gldilli, Mar 28, 2023

Why is the dosage for Anastrozole (and any other AI) the same for everyone no matter your weight or size? Does this-one size-fits-all approach have an impact on side effects, risk of recurrence, etc. I’d like to know what the medical community has to say.

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Profile picture for sue417 @sue417

Hi
I have been wondering the same thing lately why would they not test your levels first to see where your estrogen is at because how do they know how low it is especially when your post menopausal

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@sue417 no one tested me for my hormone levels when they put me on Letrozole. I wanted more information about it so I went to one of the blood testing labs that do whatever testing you want. You have to pay for it. Mine cost about 300. I got the results in one or two days. It was worth it to me since now I have something to go by. I live in Charleston, SC have no one except the cancer Dr. who I think is wonderful. But at the same time I have no one to call , no one to advocate for me. I've been insulted by a PA who worked for the surgeon and have not seen him since the surgery. Anyway we need more people to are helpful and not unkind.

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Profile picture for gcgc @gcgc

@sue417 no one tested me for my hormone levels when they put me on Letrozole. I wanted more information about it so I went to one of the blood testing labs that do whatever testing you want. You have to pay for it. Mine cost about 300. I got the results in one or two days. It was worth it to me since now I have something to go by. I live in Charleston, SC have no one except the cancer Dr. who I think is wonderful. But at the same time I have no one to call , no one to advocate for me. I've been insulted by a PA who worked for the surgeon and have not seen him since the surgery. Anyway we need more people to are helpful and not unkind.

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@gcgc
Hi
I live in Canada so there's no where you can go to get hormone testing without doctor's orders. I am postmenopausal so they really don't care apparently where your hormones are at. Do you not follow up with an oncologist every 6 months. I've not seen my surgeon either there's no reason to but I do see my oncologist regularly

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I am on anastrozole for breast cancer that moved into my lymph nodes after breasts removed/was on tamoxifen for 5 years - 30 years ago - now 72 with this return - I have asked my oncologist about measurement/testing of my estrogen levels - they advised not a reliable test since for older women it is a type of estrogen that is manufactured in your fat that is feeding the estrogen positive cancer - the AI inhibit the aromatase enzyme that is responsible for producing about 10% of the estrogen in postmenopausal women - made in the ovaries, fat tissue - smaller amounts in brain, bones, skin, blood vessels, breast tissue. What oncologists are doing are "killing cancer" but ignoring the profound benefits to older women/quality of life - it is our survival agent for various issues - bones, heart/vascular, brain, metabolic, immune, skin & genital health. It is a HUGE OFFSET - that must be considered - when I have brought up the awful impact on my body - their comment was "consider the alternative" - their answer is death or take the AI. I am taking but not convinced. We need to strengthen our own immune system - hope in my life we will eventually see oncologists allow our bodies to kill the cancer instead of therapy/drugs that kill cancer & the rest of our body. CANCER PATIENCES need to push the FDA to approve ANKTIVA that activated T cells and NK cells for all cancers/to enhanced our immune system to kill cancer as it was designed to - our own bodies are amazing - it is a whole new way of thinking.

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I had terrible brain fog, extreme osteoporosis, and dryness so I quit taking them after I read Estrogen Matters. It says the body needs estrogen to function properly and without it we die of heart disease instead of bc.

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Everyone's comments are very helpful. For me.. I was diagnosed with IDC stage 2 (June '23), 2 chemo rounds, lumpectomy (3 positive lymph nodes), 30 rounds of radiation. NO family history that i know of, BRCA negative (40), Letrozole started Sept '23. took 10 day break to try Anastrozole and it was terrible on my gut so back to Letrozole. The damage to my body since being on Letrozole is extreme osteoporosis, trigger finger surgery on all 10 fingers! still lots of finger pain, now foot pain, the dryness 'everywhere' is ridiculous! hot flashes non-stop, muscle pain, extremely fidgety, difficult to sleep. I eventually went to Letrozole 3x wk and over time, it wasn't as bad as in the beginning but it was very clear what this was doing to my body. March '25 had my ovaries removed. I love to garden, and other outside things and i just hurt! Just switched to Exemestane in Jan '26 but that is just as bad, maybe i need more time to get used to it? my quality of life is getting worse by the day and Im sure many side effects will not be reversible. Im having to decide if i want to continue on this path of destruction to my body or risk cancer returning. I just don't know what my risk level is?
Of course Drs wont tell you its ok to stop or reduce the amt as they are or feel responsible if cancer returns so unfortunately they have to go by the books. They also told me estrogen testing is not reliable so making med decisions on these results are not solid. Can anyone tell me if they used Exemestane and how they did on it? and if anyone stopped after 3-5 years and did they return to normal or have permanent damage? My Dr also said that cancer can return in a different place and that scares me. I know everyone is different but i just need to hear other experiences to make my decision. I recently stopped all meds but wonder if that's not a good idea? please help

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@kherman8434
I don't know what has to happen so that they will start to listen to patients because I think it's better to know what your numbers are for sure before starting that med.
I did not take an AI my breast cancer was dcis her2 negative stage 0. I had 20 rounds of radiation. 1 lymph node removed which was clear.
They immediately took me off my hormone therapy the day my GP told me I had breast cancer which put me into one horrid year of menopause. I had been on it for 13 years and I felt great. Now I feel like crap and I'm exhausted all the time and have brutal hot flashes still it's so frustrating.

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@sue417
Crazy that the standard is 1 mg even if estrogen level 30 +/- or under 15! Makes no sense that there is no 0.5 mg option for those with low estrogen level or bad side effects. Taking every other day an option, it doesn’t seem ideal. The other option is going to a special pharmacy that does compounding. It is unlikely a doctor will write the order (lack of research and potential liability) since “ the standard of care” is 1 mg!

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Profile picture for sue417 @sue417

@gcgc
Hi
I live in Canada so there's no where you can go to get hormone testing without doctor's orders. I am postmenopausal so they really don't care apparently where your hormones are at. Do you not follow up with an oncologist every 6 months. I've not seen my surgeon either there's no reason to but I do see my oncologist regularly

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@sue417

I googled the question and there seems there is a lab that will test without an order. I recall $79. Not sure how it works. Maybe they send an Oder to a local lab you go to. My doctor finally agreed to test but don’t think he ordered the better test.

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Profile picture for karenzm @karenzm

Everyone's comments are very helpful. For me.. I was diagnosed with IDC stage 2 (June '23), 2 chemo rounds, lumpectomy (3 positive lymph nodes), 30 rounds of radiation. NO family history that i know of, BRCA negative (40), Letrozole started Sept '23. took 10 day break to try Anastrozole and it was terrible on my gut so back to Letrozole. The damage to my body since being on Letrozole is extreme osteoporosis, trigger finger surgery on all 10 fingers! still lots of finger pain, now foot pain, the dryness 'everywhere' is ridiculous! hot flashes non-stop, muscle pain, extremely fidgety, difficult to sleep. I eventually went to Letrozole 3x wk and over time, it wasn't as bad as in the beginning but it was very clear what this was doing to my body. March '25 had my ovaries removed. I love to garden, and other outside things and i just hurt! Just switched to Exemestane in Jan '26 but that is just as bad, maybe i need more time to get used to it? my quality of life is getting worse by the day and Im sure many side effects will not be reversible. Im having to decide if i want to continue on this path of destruction to my body or risk cancer returning. I just don't know what my risk level is?
Of course Drs wont tell you its ok to stop or reduce the amt as they are or feel responsible if cancer returns so unfortunately they have to go by the books. They also told me estrogen testing is not reliable so making med decisions on these results are not solid. Can anyone tell me if they used Exemestane and how they did on it? and if anyone stopped after 3-5 years and did they return to normal or have permanent damage? My Dr also said that cancer can return in a different place and that scares me. I know everyone is different but i just need to hear other experiences to make my decision. I recently stopped all meds but wonder if that's not a good idea? please help

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@karenzm
Disclaimer first: I am 69 and am just 6 months in on my cancer journey.
I had extreme side effects and am concerned about heart and bone health from Letrozole so I reduced dose to every other day after reading a NIH study.
I also started working with a Functional Medicine Doc who is giving me testosterone pellets (that include an AI). He also gave me a DIM supplement to remove any estrogen metabolites. Testing 6 weeks out are good, and I feel almost normal again!

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What is a DIM supplement?

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@queenofjacks perhaps I'm not comprehending what that article is saying but to me, it has conflicting info re: percentages reducing risk of recurrence.

"Moreover, AI's have also been found to reduce recurrence rates of breast cancer by about 30% compared to Tamoxifen in postmenopausal women".

"The authors concluded that compared to Tamoxifen, use of an AI, reduced the risk of breast cancer recurrence by 3% at 5 & 10 years".

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