Letrozole and checking estrogen levels

I wish you well and respect your decision. I too have wondered why estrogen levels are not being baselined and monitored with aromatase inhibitors for the same reasons. There are statistics to support the long term AI use however why not integrate monitored estrogen levels with those statistics? This could define a population that may not need to suffer through this. Maybe that has been done. I haven't searched yet. I started on letrozole 3 months ago. I'm medicating my joint pain and stiffness with fair relief from daily ibuprofen, but concerned about long-term regular use of both. I',m 63 and worried about my quality of life as well as osteoporosis. I am looking for a different oncologist and will incorporate this question in my "2nd opinion". I am also seeing a high-risk breast cancer specialist NP for another reason next week. I will discuss it with her and get back to you. I was started on letrozole prior to bilat. mastectomy with 5 tumours and now informed that I cannot get an Oncotype DX test due to my breast tumour tissue needed for this test must not have been exposed to AIs and must be at least 2 mm piece of continuous tissue. The size requirement rules out all 6 biopsy samples I am left being told if I needed any treatment, they will never know so get on with my life. have no sense of prognosis and any potential chemo I may have needed will not be considered. No special monitoring. This is another issue with studies and practice not in sync.

Jump to this post

I was on Anastrozole and I posed this exact question to my Ex-Oncologist. Found another, but he could not answer either. Prior to my surgery or even prior to staring AI, no test was performed that would give a baseline of my estrogen level. When I inquired with my oncologist ‘how do you k ie this AI is working, as you do not have a baseline comparison. He said ‘we just take it for granted’. 😱. That is not the right answer from a doctor from my pint of view. He flippantly said he could do an estrogen test. All the results of that test said <10. 🤷‍♀️ He said that’s good. My thinking is maybe it was already less than 10. I went to a Women’s clinics and paid for an estrogen test of estradiol and another I can’t remember, but due to the fact there are standard test comparisons could not be done.
You would Think the Estrogen level would be an important indicator since that is what the AI is ‘suppose’ to be working on. As of this date I’ve not received good info to my satisfaction.

Jump to this post

I too was put on Femara AI, and have been asking for a baseline estrogen test which neither the Oncologist nor Gynocologist was finding necessary to do. The GYN told me not to bother because "finding out the results would drive me nuts!" She said just take the AI and don't ask questions! The Oncologist thought it might be a good idea but never actually bothered to order the bloodwork.
I finally out of personal interest got my GP to do a blood test for estrogen levels and Vitamin/Minerals etc. So that I know for myself what's going on.
My Estradiol score is 18 pmol/l. which is already extremely low for postmenopausal. I talked to my GYN again and she says, take the AI anyway!
Really don't get their logic, considering the after effects of AI are not to be understimated. Yes, they reduce the risk of cancer return, but it also increases cholesterol which could lead to heart issues and decreased bone density leading to osteoporosis. I already have all the symptoms of low estrogen. Should I really be decreasing it to what? Below 0?
I'm not convinced with the plan, if they don't explain to me why they have no interest in knowing from what level estrogen they start treatment, and to what level they aim to go. It's just "shut up and take the AI for 5 years"

Jump to this post

I, too, was in the same situation and very frustrated with their lack of concern/interest in serum estrogen levels. They seemed so important during the Anastrozole study I was in. But when I "failed" the study, the estrogen levels were no longer important. Seemed very contradictory to me. I decided not to go on Letrozole, which was the next AI in line. The side effects/payout wasn't worth it for me. I am amping up my immune system for overall better health (guided by integrative medicine physician). It was a very difficult decision for me, but I don't want fear to run my life. I'm doing the best I can and what will, hopefully, work for me. There is no magic pill/program for everyone. We all need to support each other and do what we can to move forward and be positive. I wish all the best to you in your journey.

Jump to this post

I took letrozole for 5 1/2 months then my oncologist said I could take a break because of extreme side effects. She now wants me to take exemestane to see what side effects I might experience. After 4 1/2 months my trigger thumbs are finally getting better. I'm trying to decide whether to go back on the AIS. I don't really want to put my body through this kind of test. I'm puzzled why the doctors aren't interested in tracking estrogen levels. My primary physician used to be a naturopath before cancer. She tracked my hormone levels because I was taking bioidentical HRT. I think I will have to go to her and pay out of pocket for a blood test to track estrogen levels. It's expensive and medicare won't pay for it. This is being a very difficult decision for me, as well, and I found your post helpful and hopeful! I don't want fear to run my life either. I'm still in the information gathering stage and seeking support. My oncologist has said that if I choose not to take the AIs she can only see me once a year to palpate the scar left by the bilateral mastectomy. Evidently there is no other screening available to track possible recurrance, and then if/when symptoms show up. I'm hoping my PCP will provide some support, as well. My Oncodx score was 11. ILC

Jump to this post

I'm forever in the information gathering mode. Check out the book called "Radical Remission" by Kelly Turner. It was recommended to me by Dr. Stacy D'Andre, an integrative medicine specialist. It is fascinating and chock full of information! Building up your immune system is a key factor and having a positive attitude.

Jump to this post

With the number of similar questions regarding baseline estrogen levels before starting AIs, it is clear to me that doctors and practitioners are not knowing how the AIs are affecting our levels. Like my Ex Oncologist told me, when asked how they know it’s working when there’s no baseline, ‘We just take it for granted’ NOT the correct answer.
I stopped my Anastrozole April 15 of this year. Made me feel 90 yrs old. I couldn’t even get in or out of car w/o help. Hip pain was bad. Instead of blaming the meds, I bought orthotics, did PT & walked (the best I could) to rule out it was me. It almost 5 months and I’m back to normal, for me. I’m able to be active again. I think at the 6 month mark or 9 months I’ll have the same estrogen test I had that just stated <10. I don’t know what that means but my EX oncologist (who flippantly told me, that was good) It’s the only number I have. 🤷‍♀️ The decision to stop AI was not easy. My hubby and I discussed at length. My quality of life at 69 is important and I’m proactive w/ my health. The decision isn’t for everyone and every cancer situation is different. My oncologist appoint last month went well and she didn’t try snd talk me into continuing w/ med. 🙏🏼 It continues to go well.
Blessings to you all.

Jump to this post