Timing of HRT, anastrozole - taking day or night?

@pktaylor59
Find another oncologist.
It’s absolutely inappropriate for the nurse to tell you that your cancer will come back if you don’t take one of the meds. It’s like asking a magic eight ball. The studies have shown that the 10 year survival rate is about 30% higher. That number is misleading. It’s based on the cohort of the total study population. It’s more complicated than the pharmaceutical industry makes it appear.
For example, if you have a personal overall 10% risk of dying from your breast cancer without taking any medications your overall risk with AIs is 7%. It’s a percentage of a percentage. I recommend Googling what the percentage rate truly means. True survival rates are so individual and personal (based on your stage, success of chemo, surgery, radiation etc.) that no one should believe that death or survival is inevitable with or without the meds.
My oncologist pushed Verzenio on me. The toxicity was life threatening. I stopped taking it after 10 days. I changed oncologists. My new oncologist was capable of comprehending the statistics. There was a 2% overall survival rate with the drug. But that number is based on only those patients who were not forced to stop the medication due to toxicity. So it makes the actual study statistics nearly invalid.
The quality of life issue is also very personal. Medical professionals often lean towards treatment regardless of toxicity. And we patients have every right to choose whether we are willing to allow a doctor to make that choice for us. I personally prefer to refuse to allow medical practitioners to choose how I live and die. I have been taking Anastrozole for 2.5 years. I’ve tried Exemestane — no difference.
I have taken four breaks of up to a month to manage my side effects. I feel terrible all the time and don’t get out or exercise enough. I now have osteoporosis (of course). I haven’t yet decided to stop the medication. But I am leaning towards stopping. The most ridiculous part of dealing with the side effects is all the specialists I see who tell me that AIs, chemo and radiation have no impact on my worsening health. They don’t know. And that makes everything the say quite literally useless to me.

@dmr4ever Your last statement is what really hits home. I understand they’ve never been through this in most cases so they don’t know what we are actually going through. I get a lot of the “the medication doesn’t cause that” when I mention something. I do a lot of my own research. Been through chemo but it’s been over 2 years now so I shouldn’t still be tired or have brain fog etc. developed tinnitus on exemestane, not a listed side effect, but I found an article stating up to 56% of women on exemestane develop it. Weight gain! Claim is ai doesn’t cause it, just redistributes fat to mid section and harder to loose weight. These from multiple areas - PCP, Oncologist, surgeon. I’m currently on a med vacation - supposed to be 4 weeks but I’m currently at 6 because it seems like this is the first time in 3 years I’ve actually felt almost good. I’ll call this week and see what he wants me to do but have a list of things that I’ve noted are different off the meds and will let him know even if they aren’t listed as a typical side effect.

Maybe this has already come up, sorry if so. I’m supposed to start an AI after DCIS diagnosis in 5 months ago. I’m really worried about side effects—already have osteoporosis, and went through menopause years ago. Are there tests to see how much estrogen is actually circulating in your body prior to using an inhibitor? I feel that my estrogen level might already be very low, and trying to suppress it any lower may do more harm than good. It would be nice to have a baseline number, to help evaluate the AI dosage and effects. Maybe I am misunderstanding the whole mechanism of the treatment?

@beyourownadvocate
Thank you so much! I will try morning then! I had insomnia bad when I took it last time. Maybe that was my problem?

@orienteer
Women’s endocrine systems naturally produce testosterone which is quickly converted into estrogen. The body makes female hormones even if we have diminished levels of estrogen due to menopause and/or surgical removal of ovaries. Our serum estrogen is likely very low but AIs block testosterone from being converted to estrogen. This starves cancer cells of that converted estrogen.
You’re right that side effects may be related to the AI drugs’ mechanism of action as much as the lack of estrogen. It’s kind of amazing that researchers found that cancer can feed on these very small amounts.
The struggle is real. And the decision we have to make about taking AIs is hard every single day.

@mistymar
I saw my oncologist last week and have decided to stay on anastrozole because I am high risk. After my recent break I switched to taking it at bedtime instead of mornings. I only feel marginally better off the drug. That helps with the nausea.

It may help if you review your risk of recurrence vs any actual harm the side effects may cause. You’re an individual not a statistic.

It’s a shame that no studies follow up with patients about real life side effects.

I worked on editing drug inserts for a medical publisher and am very familiar with the long lists of side effects for drugs. Doctors only talk about the most common ones. And they dismiss everything else. If a side effect is lower on the list, in the single digits, doctors decide it’s too rare for anyone to experience. That attitude is just lazy.

@dmr4ever appreciate your response. I am a medical professional and therefore fully understand those “rare” side effects. Reading a PDR makes you not even want to take an aspirin! I’ve tried to review the risk of being off but that’s difficult because most of the time they don’t fit the circumstances. I’ve been to 1 site that said my risk on/off the medication was <1% difference and that I shouldn’t have even done chemo or radiation (too late!). But they only look at staging. Not at the Ki67 or oncotype. Another said they couldn’t give me any numbers because I’d already had chemo. Yet another said it was only to determine if I should continue ai past 5 years. So I am, I think like a lot of us, following the recommendations of our oncologist who will almost always err on the side of caution (ie - standard of care). And also that unrelenting fear that “if I stop the medication I may feel better but could that make the tumor come back so I should just stay on the medication or maybe shorter lifespan but better quality but then would I have to go through all this again if it comes back and would I or should I just stop, live my life and if it comes back accept I’ve lived long enough, or just stay on the meds and hope that there won’t be much damage, it’s only 5 years or should I ………….” that constantly sit in the back of my overactive brain. Ah well, we are surviving and I think a lot of it is these forums that open up the “we are not alone” and the “no, your not crazy” dialogues. Thanks to all who participate and help keep us sane and let us open up to someone who will listen and sympathize.

@dmr4ever appreciate your response. I am a medical professional and therefore fully understand those “rare” side effects. Reading a PDR makes you not even want to take an aspirin! I’ve tried to review the risk of being off but that’s difficult because most of the time they don’t fit the circumstances. I’ve been to 1 site that said my risk on/off the medication was <1% difference and that I shouldn’t have even done chemo or radiation (too late!). But they only look at staging. Not at the Ki67 or oncotype. Another said they couldn’t give me any numbers because I’d already had chemo. Yet another said it was only to determine if I should continue ai past 5 years. So I am, I think like a lot of us, following the recommendations of our oncologist who will almost always err on the side of caution (ie - standard of care). And also that unrelenting fear that “if I stop the medication I may feel better but could that make the tumor come back so I should just stay on the medication or maybe shorter lifespan but better quality but then would I have to go through all this again if it comes back and would I or should I just stop, live my life and if it comes back accept I’ve lived long enough, or just stay on the meds and hope that there won’t be much damage, it’s only 5 years or should I ………….” that constantly sit in the back of my overactive brain. Ah well, we are surviving and I think a lot of it is these forums that open up the “we are not alone” and the “no, your not crazy” dialogues. Thanks to all who participate and help keep us sane and let us open up to someone who will listen and sympathize.