Concerned about the side effects of anastrozole

Hello to all....... I'm chiming in here and first want to say that what I'm about to say makes me sound like a 'negative nabob' but that's really not my intention.
The AI's were not an option for me. I tried 3 of 4 available over the 5 year course of my Stage 0 to Stage 1 (bi lateral mastectomy) journey. I tired Tamoxifen -raised my blood pressure to extremely high levels, Letrozole - got Shingles and joint pain and severe depression (I'm never depressed, I can't be, I'm far too anxious, ha ha), Arimidex - blood in my stools and a rash for over a year along with severe depression and joint pain.. I'm not taking the meds now at all and my doctors are recommending that I take them only if my cancer comes back and of course, I'm hoping it won't!!!
From my personal experience and what I've read on this site and many other places - AI's have side effects and most people will experience at least some of the side effects. Many people experience, as I did, extreme side effects. Yes, some of what you feel might be simply the reduction of hormones in our bodies and something you might experience with aging (but much more slowly). This is taking all of your hormones from your body in a very, very short period of time, causing the many side effects. But, there is something else here with AI's........they are doing something else, in addition to reducing the hormones and I believe that's what really causes the serious side effects. I don't know what that is but what you are feeling from these drugs is real......it is not 'just you', it is not that all women are simply taking these pills and you are the one who can't tolerate them. It's many, many women out there. So, hopefully, if as they say, misery loves company, we're not alone.
I was lucky and I am grateful that my cancer was only Stage 1, it had not spread and that made my decision not to use AI's a little easier for both me and my doctors. But, what I did ask for was on going blood tests to determine the estrogen levels in my body (I had lots of estrogen, no progesterone) fueling my cancer. For over 3 years now my blood levels are below normal for estrogen. My body still makes it they say but in such small amounts it's not recordable. And due to the low estrogen levels I now have (and no progesterone or testosterone - which can convert to estrogen) I do have changes - hair loss, some joint pain, wrinkles, saggy skin....you ladies all know the aging complaints if you're of a 'certain age'. But, I do not have depression or a rash or severe joint pain, etc.....those all stopped with the run through the AI's.
Am I afraid of cancer recurrence? Yes, everyday. It's the new 'not so normal'.
I did change my diet, lose weight and change my lifestyle to include more supplements, Vitamin D, Omegas - more exercise, etc. My health is better overall than when I was diagnosed with cancer and I'm lucky again - I have no other health conditions......

My message I guess is to know you are not alone - side effects from AI's are very common and what you feel from them is real. It's hard to gauge their overall effect on your physical and emotional health in some ways because after you are diagnosed with cancer, endure treatments and deal with all of that you are tired and emotionaly drained. It's hard to add yet another onslaught of symptoms and feelings to navigate.

Ask your doctor for blood tests to determine your hormone levels 'off' the drugs........what is your baseline? This may take a couple of blood tests spaced over several months, but you should at least know where you are starting. Once I requested that and my doctors saw that I had so little estrogen to feed my cancer, they were less inclined to recommend the AI's. As you continue to use the AI's, request blood tests to determine how much effect they are having on your hormones so you can weigh that against the side effects.

The AI's work, they help you fight cancer and cancer recurrence. It's up to each of us to determine what that cost will be and how much we can endure......and that's the hard part because it's on us as patients and weighing feeling miserable for 5 years against getting cancer? Not much of a choice and a very difficult one to make.

Hugs to all.

I just today saw my oncologist. I had my surgery 8/2019 and have been on Anastrozole almost 2 years. I am just starting to have joint aches. The hot flashes are nothing new for me. I'm 68. When I inquired about the level of my estrogen in relation to how the med was working, his response was that he takes it for granted in is working. Estrogen is 'suppose' to be sucked out of my body. He said he would have to see if there was an estrogen test. I am pretty well put off with him. Any opinions. What test should I be asking my doctor for to see if the Anastrozole is actually working. I would like to know if i could take it say every other day to keep my estrogen low or do I REALLY need it every day. Just because the protocol is 1 pill a day for everyone doesn't make it the right dosage. Thanks for your post.

I have some thoughts on the AI's in general I'm going to share and I hope it doesn't get me kicked off this site (I love this site!)

When I was first diagnosed I was told NOT to go on sites, not to research, not to read anything but what they handed me at the doctors office because it would just scare and upset me and they were right. I went right ahead and researched and still do. The problem with research and reading and going onto support sites is that you will see the worst of the worst because people who aren't having symptoms or serious problems are moving on and living their lives but where does that leave those of us who just want to know and need to have the information? So, I read everything I can find and research every little thing because then at least I know what I don't have to worry about (ha ha).
The research I have done on the AI's shows all of the symptoms people on this site and thread complain of having. What we don't see is the people who take the drugs, have few if any symptoms and can use this treatment successfully and I'm sure there are many. However, that's not many of us and we need a place to ask questions, get support and get help deciding how to move forward. For those of us with symptoms from the AI's just know........the doctors will try to keep you on their program and on the pills as much and as long as they can because that's their job and that's what they do..........they fight cancer. They don't really know how you feel and how your quality of life day to day is affected and they don't really have any other options for you (at least not right now). The symptoms you are experiencing are unfortunately real and can be very serious. I know because that's been my experience.
I have had 4 oncologists in total for my care in the past five years and all of them recommended the AI's and all of them have pulled me off of them but then again, I have a small chance of recurrence anyway, so the decision was easier. But an important point to consider is this................the doctors will always recommend this treatment and will try to keep you on them if at all possible because that's what they do. They will tell you if you get bone issues, they have a drug for that. If you get depression they have a drug for that. If you get heart issues, they have a drug for that. It's what they do because the job of an oncologist is to cure or keep your cancer at bay....that's it. I am not saying doctors are cold hearted or don't care about how you feel, I'm sure they do for the most part but it doesn't change their protocol or options. AI's are a blanket treatment that works but for some the cost is too great.
If the AI's are causing you serious side effects it's time to ask your oncologist to explore additional options to either alleviate symptoms or possibly find targeted or immunotherapy or CBD/THC or............but please don't let them make you feel like this isn't really happening to you because as you see, there are many of us who can't tolerate these drugs and side effects.
I'm with all of you who are going through this because I've been there and still worry each day about recurrence since I can't take the drugs....but I couldn't get out of bed, couldn't function and couldn't enjoy my life. Push for treatment from your doctors that is tailored to you because it's your life and you need the support even if you can't fit into the bubble of care they have created.
Off the soapbox and many hugs to all

I will be starting Anastrozole 1mg soon and agree to be in a study group. The info I got says that my blood will be checked in 8-10 weeks to see if it is working. Don't know what the test is called, but it exists.

That study will have them checking your estrogen levels more often. I was on a study last year. I hope that the 1 mg pill will reduce your estrogen level low enough. It does for most people (but not for me, so I had to go on the heavier dose of Anastrozole !!! ) All the best!!

It was a blood draw for me that told the oncologist that my estrogen was low enough. But it is frustrating when they can't tell you the exact number you have ..and what is acceptable. Keep pushing!!!!