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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@ssalget

Thank you for this post. This is almost exactly my story. I had a double mastectomy, with clean margins and clear lymph nodes in October 2021, and a low OncoDX score of 11. I will be 70 in December. You put it very well. "Instead of celebrating being cancer free, I feel like I'm living with a cancer that hasn't been cured." I had very severe side effects on Letrozole. That prompted me to do more research. I have some heart issues and my bone scan revealed osteopenia. I have pretty much decided to work on building up my immune system through diet and supplements, exercising more, controling my weight and using techniques to lessen stress. I am waiting for an appointment with a integrative oncologist. My medical oncologist is not happy with my decision and doesn't have any other support to offer, except yearly palpation of the mastectomy scar. I feel pretty much on my own to find support, but I'm working on changing my mindset to celebrating a win over cancer and feeling grateful for everyday and the love and support of my family and friends. It is indeed a life changing experience and a very personal one. I too, send my best to all on this journey.

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Just curious, if you stayed on the meds what would your oncology appointments look like? IMO nothing should change if they are not actively measuring estradiol levels anyway! And the oncologist might suggest seeing you MORE frequently if not on the med IMO. Some of these doc decisions just don’t make sense.

I’m definitely looking for an integrative oncologist myself as I want to support my immune system and my bone mineral density going forward. I’m not having any obvious ( for now) side effects from Anastrozole and in month six. I’m grateful for that. But I worry about cholesterol and osteo issues.

Hoping for the best for you on your journey. 🌸

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Thank you. I was told that I would be seeing the Oncologist every six months, if I was taking the AI. She does a physical exam of the chest area and palpates, I assume looking for lumps? My cancer was lobular which I am told does not organize as a lump, but I have no breast tissue in that area, so I'm not sure what the palpation is for. They offered me exemestane. So far I have chosen not to start taking it. I had a heart attack before they found breast cancer. And my bone scan showed osteopenia. My mother died from falling and fracturing her hip. It was a very long and painful death. I want to avoid that experience if I can, and I want to keep my arteries strong. I have not made an appointment with an integrative or naturopathic oncologist yet. I am looking for one I can afford, and I may have to change my medicare advantage plan.
Hoping for the best for you, as well.

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@ssalget

Thank you. I was told that I would be seeing the Oncologist every six months, if I was taking the AI. She does a physical exam of the chest area and palpates, I assume looking for lumps? My cancer was lobular which I am told does not organize as a lump, but I have no breast tissue in that area, so I'm not sure what the palpation is for. They offered me exemestane. So far I have chosen not to start taking it. I had a heart attack before they found breast cancer. And my bone scan showed osteopenia. My mother died from falling and fracturing her hip. It was a very long and painful death. I want to avoid that experience if I can, and I want to keep my arteries strong. I have not made an appointment with an integrative or naturopathic oncologist yet. I am looking for one I can afford, and I may have to change my medicare advantage plan.
Hoping for the best for you, as well.

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I started an AI with osteoporosis that had been present for 7 years. I did not have osteopenia; I had osteoporosis that was somewhat advanced. My docs did not want to give me Reclast due to afib but that factor has since been debunked. I got through 5 years without fracture. My bone density went down the first year rather abruptly similar to menopause, and then the loss eased up. (I fractured three years after finishing, but could have done Tymlos earlier).

Choleslterol for me did not worsen on the meds. Everyone is different. I felt it was worth trying the meds and stayed on them for 5 years. The Breast Cancer Index done at year 5 indicated no further benefit for years 5-10.

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@windyshores

Read the Femara insert that contains info on studies on the effects on estradiol levels. The insert says that even a 20% dose effectively eliminates that hormone or, I should say, reduces it to a level that is not detectable. I don't think there is a need to do testing but the doctor should explain this better!

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@windyshores I have been on Letrozole since March 31st and my estrogen was tested in May by my gynocologist and it was 8.87. My oncologist doesn't test it either but said to have it checked again so I will in another month or so.

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@ssalget

Thank you. I will look into that. Someone else mentioned that book. I am working on building my immune system and have started using a supplement called DIM. My naturopath had suggested I take that a few years ago, before my cancer diagnosis.

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My understanding is that DIM is not effective if post menopausal? Is that correct?

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@semurrey

My understanding is that DIM is not effective if post menopausal? Is that correct?

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I have not found that in my research. I have been taking it for over a year now.

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Hi @ssalget - I hope you are correct but I only read studies with its effects on pre menopausal breast cancer - see below link - small sampling but it did study post menopausal women and showed no significant impact on the ratio. How much do you take?

https://pubmed.ncbi.nlm.nih.gov/15623462/
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@windyshores

Studies cited in the Femara insert say that even at 20% dose, estradiol levels are not detectable. I don't see the usefulness of blood tests since studies showed that the meds were effective in basically eliminating the hormonal level. Maybe someone can explain why these tests would be helpful.

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@windyshores My question here is, if 20% of the standard dose is enough to make estradiol levels undetectable, why are we all taking the full dose? Higher dose means more side effects. I feel like I'm missing something here. Is there more to that? Is something different about the 20% vs. 100% dose outcome? Thanks for elaborating if you can.

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@madeler22

I’m considering stopping my meds. I took Anastrozole for 4 months after radiation was completed (Stage 1a ductal carcinoma in situ of lower inside quadrant of right breast). Anastrozole attacked my joints badly. My medical oncologist told me to take July off, which I did, then I started Letrozole in August. This one affects my sleep, my moods and my weight. It’s almost like being back in Peri-menopause. I cry over nothing some days. Overall I have not been myself since I’ve started the drug regimen. I am weighing the 2-4% “benefit” versus quality of life. Instead of celebrating being cancer free, I feel like I’m living with a cancer that hasn’t been cured.
I will be 69 yrs old in Dec, which is also the month I’ll be one-year post surgery (lumpectomy and 3 lymph nodes removed).
As always, this is my journey, so I don’t propose to know what is right for someone else. Bless all of you who are on your own journey as it is life-changing, nonetheless. 💕

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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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@cherziggy many of us tolerated these meds pretty well. I hope you will at least try 🙂 And in my experience the body adjusted so I think it is good to give it a little time before deciding whether to stay on. Just my opinion.

@californiazebra I don't know why side effects would be different at 100% versus 20% dose. I just don't understand but a doc could explain. To me, if the AI is effective, that means it has reduced estrogen below detectable levels. Side effects would be from the estrogen suppression, no matter what the dose. So wouldn't side effects be the same at all levels of medication, if it was working?

My doc did say we can take them alternate days- I never did. The doc mentioned reducing side effects this way but I would love to know what the mechanism for that would be, since estrogen suppression is the cause of side effects, presumably.

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