Concerned about the side effects of anastrozole

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.

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 had no hair loss, but terrible side effects. crippling hands and feet, insomnia, lethargy, and went into a very dark place. Stopped them all and now I take DIM supplements with myamin.

Thank you! Very helpful to see all the drugs side by side. I'm sticking with arimidex for now. My new trial is the Fosamax I've recently started because of the bone thinning SE's of arimedex. I've had severe thigh pain, my doc at Mayo checked for clots and bone issues, but all were negative. The pain went away after 24 hours, but scared me. I've read so many horror stories about that drug affecting the body adversely. Has anyone used it with minimal effects? I was told to come back in if it occurs again.

Thank you for sharing your experience. I like your perspective that the side effects are basically more menopause-good point. Thanks!

Hi Mary @mollymiller, Imagine I've just poured you a cup of tea and we're sitting down together. If I were sitting across from you right now, this is what I would tell you. Thank goodness that you did the ColonGuard test. While it has a high false positive rate, you can get a colonoscopy to make sure. The best thing about screening for this type of cancer is that it can be stopped in its tracks. Colon cancer is very slow growing. It often starts with stage 0 polyps which IF you have any, they can remove during the colonoscopy.

The preparation for a colonoscopy is icky! I'm not going to lie, but in hindsight it really isn't that bad. I try the mind over matter thing and pretend I'm at some fancy spa doing a cleanse LOL. I've had 2 colonoscopies because of high familial risk. The second one they found a nasty polyp and removed it. I was so relieved that I hadn't delayed the procedure.

Here's another little thing to make you giggle. Like you, I'm not a great sleeper. The deep rest that I awake from after a colonoscopy is my fringe benefit -- that along with the warm blankets. Spa? Well no, but imagining that it is helps me. We can get through this together.

Would you like another cup of tea?