Estrogen Levels

Floral

I have a question that I never see addressed and it seems very basic to me. I don’t see my MO for several weeks, so I thought I’d try here.

I am just beginning Arimidex, will be doing radiation, and chemo was ruled out by Oncotype. So he writes me a script for the drug, a Dexascan, and we talk about Zometa. He also wants some base level liver numbers. This drug supposedly helps me by reducing estrogen, but at no time do we talk about or check out actual estrogen levels. So I’m just going to take this drug and assume, on my life possibly, that it is reducing my estrogen level? This seems crazy to me.

I take low blood pressure medicine and my blood pressure is checked, no one just assumes it’s fine because I’m taking the medicine. Some people need to try a couple drugs before they find one that works. What am I missing????

Badluckbdaygirl

Hi Floral,

I just started Tamoxifen a few days ago. At my first MO appt (a month ago) they took three viles of blood, but never told me why. I had to wait three weeks for my next appointment as they ran an Oncotype for me. When I asked about my blood tests all my MO said was that my estradiol levels were very high and laughed I was no where near menopause. No joke! I already knew that! I have no idea what else they tested for other than Vitamin D. I assume a full panel as I am taking Tamoxifen. I forget to ask questions until later😂.

I am praying she will altests my estrogen level as I was highly er+. I want ovarian suppression and may have to demand as she did not seem keen on it even given my levels. I would ask for yours.

AliceBastable

All blood test details should be on your patient portals.

Floral

My blood test results are on the patient portal, although they don't test for hormone levels. There is no question of menopause, I am 62 and 10 years away from that milestone. I have noticed that they do that when people are close to that age. I was just wondering if other people were being tested for estrogen levels at a baseline before hormone therapy and then at various points after starting. I never see it mentioned on here. How do I (or my doctors) know if this drug is lowering my estrogen?

I will definitely be asking my MO the next time I am there, but I just thought maybe I was missing something. Have other people wondered this?

Ingerp

I assume the drug I’m taking as prescribed is performing its function. If it didn’t work it wouldn’t be so generally prescribed. The SEs are pretty good indicators.

Spookiesmom

I don’t think I’ve ever had estrogen pop up on my labs. You’ll know if it’s working from the se.

gb2115

They don't check levels. My guess is they can assume it works pretty well at what it's doing based on the clinical trials that show it works. Not every drug has a measurable effect in lab work.

ThreeTree

Floral - excellent question and I have wondered the same. I asked my oncologist if they test estrogen levels and all she would say is, "We just don't do it". She never said why. I had asked her how anyone would know if the letrozole I take is working and how they know if one person needs more or less than another. She had no answer and simply said that they don't test for estrogen levels and everyone gets the same 2.5 mg, period.

My question to her had been related to my concern about the dosage of letrozole and why they think a one size fits all is OK. So many of us have bad side effects and I have wondered if some of us would do better with different doses. I read the initial paper from Novartis, that was used regarding FDA approval for the drug and in those studies, if I remember correctly, they did test for estrogen levels. Interesting, they found that .5 all they way to 2.5 mg doses suppressed estrogen levels effectively. For some reason, they decided to go with the high dose as the routinely, and apparently sole, recommended one. We all have different and varying estrogen levels naturally, so again, I do not understand why they do not test and why they give the same dose to everyone.

I have heard that people who exercise vigorously (I am not one of them) and those who eat certain foods can have lower estrogen levels from that - in addition to natural individual variations. Given that the side effects are due to a lack of estrogen, and given that some of those side effects even include heart attacks and strokes, it seems like it would only make sense to test estrogen levels and adjust dosages accordingly.

My work brings me into contact with a lot of people who take psych meds, and blood levels are always checked in those cases, and if they are not monitored, terrible things can happen to the people who take them.

We all need at least some estrogen, even if a low level, otherwise we could die. I would think they could manage this in a way that we could lower our estrogen levels as much as possible without going so low as to make us exceedingly miserable and/or put our lives in danger. The research on all of this was originally done about 20 years ago and apparently nothing has really changed over the years. It seems like it might be time for a serious overall of AI dosages and how they relate to actual estrogen levels.

Maybe I am missing something too, but I just don't get why they do not test.

AliceBastable

The only time I had my estrogen levels checked was when I had endometrial cancer when I was 58, as part of the diagnostic work. I was still cranking estrogen out and showed no signs of menopause, which was one reason the doctors I saw recommended a complete hysterectomy. I'm not sure what good it would do after a breast cancer diagnosis. The AIs block estrogen from forming in the first place, and Tamoxifen makes estrogen ineffective - so testing estrogen wouldn't really be relevant anymore.

MinusTwo

Floral - not sure where you're getting you age ranges. I went through menopause at 50. It's not uncommon to deal with this in the 40s. So at 62 you may likely be close to through. I pulled the following off the web:

The average age of U.S. women at the time of menopause is 51 years. The most common age range at which women experience menopause is 48-55 years

Bonnie7

Hallelujah!! I too have questioned exactly this for the past few years! and have had to ask my GP to check my estrogen levels as they are NOT part of blood works with Onco! I have been both dubious and sceptical re the one size fits all with estrogen inhibitors, with their potency causing such significant side effects for many of us!

I now take aromasin every other day, it kills my back if I take it daily, if my side effects worsen I will reduce it further; doing this I feel I will still get some protection rather than stopping the drug altogether. My bone density is suffering too.

I work as a Nurse and would not give a hypertensive medication without checking blood pressure, yet we are expected to take these drugs, production line basis, not as an individual when everyone's cancer 'behaves' and responds differently! Some medications too are adjusted on weight, but not the al's ....I am just not convinced of this!

We have to keep questioning! 💛

Badluckbdaygirl

I think every oncologist is different. My levels were checked at my first appointment (not sure if they will be every three months). I think it was to make sure Tamoxifen was the right drug. My numbers were sky high so definitely premenopausal

Floral

Thanks for the feedback acknowledging that other people have the same and similar questions that I do. It makes me feel like less of a weirdo!!! Estrogen seems to be tested for all sorts of reasons, just not when we are on an AI to see what it is actually doing to us.

I e-mailed me MO my question and this was his response - They don't know what level of estrogen is a "good" level and they don't know at what level a med change would be called for. So my read on that is that I could get an estrogen level test and hand it to my doctor, but it really wouldn't mean anything because they don't know what a good level to achieve nonreccurence would be. Or whether they could change a dosage and maybe still get good results. I don't LIKE this answer, but I guess I have to live (hopefully) with it. It makes sense to me, because the things they do test estrogen for do have defined levels - are you in menopause, etc. What doesn't make sense is why they don't know what a good level is, but I guess that would be a complicated bit of research. I hope they are working on it somewhere. I'd sure like to know if there is a percentage of women who experience little to no change in estrogen levels, or if the drug takes some people to lower levels than they need to be. I did read one study that found that a certain (not large) percentage of women they studied had a rebound in levels after it went down initially. I guess the question is, what is meaningful clinically and what is not.

flashlight

Floral, I wouldn't start the Arimidex until after radiation is finished. You should have the Dexascan done before radiation and taking the drug. They should rule out osteoporosis first. You will need to increase your fluid intake because the Arimidex and radiation are dehydrating. Good luck to you!!

Floral

Thanks, Flashlight. My MO told me that hormone therapy usually starts after radiation. I asked him if I could do it at the same time and he wrote the script. Everything takes so long in this treatment. My surgery was 1/23 and I STILL haven't started radiation. First we had to see if I was doing chemo. No. Then he wants my incision to be completely closed and there is one little spot, on the cancer side of course, that is just taking it's time to heal. I think it will be ready by the time I see the RO week after next.

Thanks for the heads up on hydration. I do have to do a better job of that. Dexascan is in two weeks

beach2beach

My oncologist only has run the estrogen panel 2x on me in past two years. Im on tamox, havent had a period in a year but at last blood draw with estrogen levels, my numbers are still to high to be in menopause. Wish someone would tell my hot flashes to drag the estrogen out with it quicker. Making me nuts.

Floral

I had hot flashes for at least 9 years after my last period. They had finally started to go away this past year at which point I was diagnosed with BC. I have been on Arimidex for two weeks and I can’t tell if they are increasing or not. I’ve never had estrogen levels taken. Menopause for me was uneventful except for the hot flashes, and I was 10 years passed it when this mess happened

edj3

Floral you really do want to be fully healed before starting radiation. Rads can be hard on your skin so best to start with things as undamaged as possible.

MountainMomma57

These sorts of issues are what makes me bonkers in this process! I had the oncotype test, which showed that chemo was of no use to me, only after a prolonged delay in starting chemo due to surgical complications. I also wanted to know my cholesterol level and bone density as a baseline prior to starting Femara. I have those scheduled now, through my PCP, but that is just another Dr appointment to add to the calendar and I would have thought that was standard prior to prescribing. I want to take relative tests to ensure that the treatment is the right fit for me, this is not a cookie cutter disease and the treatment shouldn't be either.

HeartShapedBox

Badluckbday- unlike AIs, Tamoxifen doesn't actually reduce estrogen levels, it merely blocks breast cells from receiving estrogen (and in fact it can actually INCREASE estrogen by acting as an esteogen in the uterus and bones, which is why it slightly increases risk of endometrial and uterine cancer).

Regardless, studies do show that higher estrogen levels in general are linked to increased recurrence, so it's crazy to me that they don't test estrogen levels, even to assess if some younger women with high estrogen levels would benefit from ovarian suppression as well. Then again, there's a difference between estrogen circulating in the body, and estrogen's uptake by other cells, and perhaps there is no accurate way to test the effectiveness of any of these drugs (other than side effects, as someone else pointed out). Sadly, I've read that women that don't experience bad side effects are the ones who are likely not benefitting from hormone blockers to begin with, and women who experience the worst side effects probably are benefitting the most (but also more likely to stop treatment).

Badluckbdaygirl

Heartshaped,

That’s interesting you mentioned side effects. I’ve only been on Tamoxifen for a week (a few days of 10mg, then 15mg and am about to go to the full 20mg. My side effects are negligible. Maybe some dizziness? It may be that I’m not on the full 20mg yet. I’m nervous because I heard the same thing about effectiveness. My mother had zero side effects as well.

I think my MO just tested my levels to make sure Tamoxifen was the drug of choice. I also am going to push for Lipton or some type of ovarian suppression as I think I’m far out from menopause.

Thank you for all of the good information.

Floral

Heart shaped... And this is what worries me because in two weeks of Arimidex I’ve got no side effects, and I hate to wish for them, but how do I know this stuff is doing anything? In fairness, I never had much problem with menopause itself except hot flashes, which compared to what some people experience weren’t all that bad. Next time anybody writes for a blood test I’m asking for an estrogen level

gb2115

Hey Floral... I'm on tamoxifen so perhaps it's not exactly the same, but my side effects took awhile to really build. I think it was a couple of months before the first hot flash, then my periods got weird. 3 years in, I have all sorts of side effects that are clearly from the tamoxifen, so I have no doubt it's doing something in there!

Rah2464

I will add my voice into this topic because the lack of scientific evaluation of the efficacy of these medicines drives me crazy. Here we all are, doing the best we can to tolerate a randomly assigned dose of medication with no testing to determine if the levels are correct for us individually. We take our pills and hope hope hope that they do what they are supposed to do for us but with no way of knowing if we could perhaps take a lower dose or should really be on a different medicine.

Circulating estrogen levels aren't even the entire story. What is more important (if you are on Tamoxifen) is the level of Tamoxifen metabolites created such as Endoxifen that block those estrogen receptors. So if you do not metabolize Tamoxifen well (such as I), are you still metabolizing enough to obtain strong endoxifen levels? I asked my MO if there was a test to determine and she told me that testing is only available in the research setting. So very frustrating when this is such an impactful medication symptom wise for most and we cannot even test to see how effective it is. This is a very huge gap in my opinion in the treatment we receive. We blindly throw a standardized dose at thousands of individuals with no knowledge of effective dose. Grrrr

Anonymous

I requested from my MO, and got, tests done on my levels after being on anti-hormonals for a year. Last year I had my naturopathic oncologist check them again, and they were very low. So far so good.

Claire in AZ

BlueGirlRedState

Knowing if the drug is working, SEs, estrogen levels............. I've been told several times by different DRs that lack of SEs does not mean the drug is not working, some people just do not get them. The only time estrogen and other hormones were measured was years ago, long before cancer reared its ugly head, when DR suspected I might be pre menopausal. They have never been checked as part of cancer treatment, because it is not part of the standard, what ever that means. Maybe insurance would not pay even if a lot of other blood checks are made? My new tumor has shrunk with Ibrance and hopefully continues to shrink.

Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric(Curcumin), Gluchosamine-Chondroitin,BoneUp(multi with Coligen),Thorne (another multi), Melatonine(at night).

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.

8/2019 CT, Breast/chest , neck/thyroid ultra sound

9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)

9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.

10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.

1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.

2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray

wtfwiththeusername

I'm reluctant to take AI's for a couple of reasons. I am low risk (see profile), age 69, Oncotype 11, no lymphovascular invasion, emphatic grade 1 (a one on all three measures), etc. So it's not a clear choice when I weigh the potential side effects and loss of health benefits that estrogen provides. I have a problem with not being able to know my estrogen level before starting the therapy and after maximum suppression occurs, i.e., the efficacy of the treatment for me. Also, I haven't been able to find any study that addresses how much suppression is protective. None of the drugs reduces estrogen to zero, so how much is too much? A serious drug therapy neither of whose effectiveness nor need can be measured shouldn't be widely prescribed, in my opinion. If anyone has been able to have their levels accurately measured, I'd like to hear how you got that done.

Salamandra

"A serious drug therapy neither of whose effectiveness nor need can be measured shouldn't be widely prescribed, in my opinion."

I think that this isn't quite accurate. The efficacy/need might not be measurable on an individual basis, but on a population basis it definitely is. There is no question that AI therapy increases both disease-free survival and overall survival from breast cancer to a statistically significant degree.

It is frustrating and angering that there we have very limited ways to check for efficacy on an individual level. It seems like the Breast Cancer Index is the only relevant test and it's not yet approved for years 0-5.

wtfwiththeusername

Salamandra, thank you for your reply. I didn't express myself well. I know AI's save lives and it's a godsend they exist. If I had a worse prognosis, I'd pop those pills like candy, damn the torpedoes. I just feel the drug companies haven't finished the job. They should be working on a way to measure the drugs' effectiveness at an individual level. Not just for people like me, trying to decide. But, far more importantly, for women with a worse prognosis who are counting on the drugs to save their lives. Those women have been through enough emotionally and physically without having to also wonder if the damn things are working. I'm not angry so much (despite the rant) as surprised that we find ourselves here. Seems a little medieval.

Salamandra

wtf,

I'm with you there all the way. To me it seems like part of a bigger picture in medicine of not actually caring that much about women's quality of life and not taking women's pain seriously.

redhead403

I had the option of taking anastrozole, my medical oncologist told me that it would decrease my risk of recurrence by 1 %. I decided not to do it. I am also 69