Concerned about the side effects of anastrozole

Hello fellow Stage 1....
I had lobular (not ductal) cancer and so opted for a bi lateral mastectomy because my Stage 1 came after a Stage 0 and I'd already tried lumpectomy. All that said my risk is about the same as yours for recurrence. I tried 3 of 4 hormone drugs (Arimidex, Letrozole and Tamoxifen). With all three I had serious side effects including joint pain, depression, stomach issues and finally (my final straw), during the 3 months of trying all these drugs I got Shingles and mono. My body doesn't like any drugs, let alone these. I had to opt NOT to use the hormone drugs. They tell me if it comes back I have to use them and I suppose I will but I was so miserable and ill on them it didn't seem worth it given the chance of recurrence.
SO................I finally asked my oncologist WHY DON'T YOU TEST WOMEN'S HORMONES? And the answer was that they 'assume' all breast cancer women will be on the drugs anyway so there is no need. They tested my hormones at my request and I had so little estrogen naturally in my body that they were actually concerned that I had no estrogen (I have estrogen positive breast cancer). I had never had Progesterone or it was very, very low (hence the over dominance of estrogen by whole life) which had caused me multiple problems throughout my life. I have had the on going estrogen and progesterone tests (as well as Testosterone off and on) for 3 years now and I have no hormones to feed the cancer.
I'm sure the meds do things other than simply erasing hormones quickly from your system that are advantages for keeping breast cancer at bay but I opted to be monitored more closely and feel better day to day.
AT THE VERY LEAST........ASK YOUR DOCTORS TO DO A BLOOD TEST TO GET YOUR HORMONE LEVELS. It's easy, quick and gives you a snapshot of your hormone activity. There is a more advanced hormone profile that can be run as well that I had done during menopause (for Stage 0 breast cancer) which showed an estrogen dominance off the charts. That was a urinalysis and some blood work and was done by a homeopathic doctor my open minded oncologist at the time suggested. I learned a lot there too about acidic vs alkaline body type, diet and safe supplements to stop cancer. In my case it didn't work but perhaps slowed it down a bit. Also, I lost 30 pounds along with diet changes following my mastectomy. Hormones are produced in fat and can aggravate the levels and contribute to cancer. Another thing I learned is that many skin care products contain PABA and that can mimic hormones in your body. I use a lot of lotion (live in a dry climate) and I have changed lotions, shampoos and other products to limit my exposure. None of these changes have impacted my life greatly. In fact, most (losing weight, diet, careful use of products, etc) have actually improved my health....no nothing crazy there and nothing lost.
We are lucky we were diagnosed at a low risk stage. There are no guarantees that we won't get cancer again but you have to consider how you feel today and whether you can enjoy your life.
Finally, I still worry every day (a little) and lots when I come up on my six month check ups that not taking the pills was a mistake but they just made me feel too sick. You are not alone.......Some of us just don't tolerate the 'usual' treatment. P.S. I am about to be 61 and was diagnosed first at Stage 0 at 56 years and Stage 1 at 58 years.
HUGS............
Hugs to you!

I don't know where to join in here but here is my story and problem...April 11 I had a lumpectomy the cancer was very small all marginal tissue and 2 lymph nodes were clear. Stage 1A! Sent tumor for oncotype came back a 19 so recommended 20 radiation treatments. Did that! Rang bell June 26 and July 16 checked in with oncologist.
Now I am highly sensitive to any and all meds. I have osteoporosis, ibs-d, fibromyalgia. So, he recommends arimidex, calcium supplements, lyrica and fosomax for at least 5 years.
Knowing my body I try one at a time for a few weeks before adding on...I have tried arimidex twice now each time for 3 weeks. The first time I had to quit because I had a 30 hour hot flash! Unbelievable hot flashes! So I took a month off and tried again for 3 weeks at night hot flashes were slight but I had urgent diarrhea and my joints felt like cement and constant muscle cramping. Called doctor again he took me off again...
Really all AIs are going to do this? I'm sorry but I have lived with pain for years but nothing like this!
I was stage 1A and am having a hysterectomy in February. Why don't doctors order hormone level tests?
I will take the 12% chance with cancer. There has to be better out there!

I don't know where to join in here but here is my story and problem...April 11 I had a lumpectomy the cancer was very small all marginal tissue and 2 lymph nodes were clear. Stage 1A! Sent tumor for oncotype came back a 19 so recommended 20 radiation treatments. Did that! Rang bell June 26 and July 16 checked in with oncologist.
Now I am highly sensitive to any and all meds. I have osteoporosis, ibs-d, fibromyalgia. So, he recommends arimidex, calcium supplements, lyrica and fosomax for at least 5 years.
Knowing my body I try one at a time for a few weeks before adding on...I have tried arimidex twice now each time for 3 weeks. The first time I had to quit because I had a 30 hour hot flash! Unbelievable hot flashes! So I took a month off and tried again for 3 weeks at night hot flashes were slight but I had urgent diarrhea and my joints felt like cement and constant muscle cramping. Called doctor again he took me off again...
Really all AIs are going to do this? I'm sorry but I have lived with pain for years but nothing like this!
I was stage 1A and am having a hysterectomy in February. Why don't doctors order hormone level tests?
I will take the 12% chance with cancer. There has to be better out there!

I had surgery, chemo, and radiation, and since I was staged at 3C it didn't seem an option not to take an aromatase inhibitor. I've been on anastrozole for a little over two years. I see the range of side effects others have and count myself lucky. I may have had a little hair loss, maybe a little weight gain, but I think that's all.

Crying is OK, it's your body's way to relieve the stress and tension its going thru. Your body feels better afterwards. So have a good cry that's OK. Whats important is that the Arimidex is reducing the cancer growth.

I've just been switched from Femara to Arimidex because of bone pain with the former. Suddenly crying jags come from nowhere. My last radiation treatment was a year ago and my checkups have been fine. Feeling okay, but this is new. My history: Breast cancer diagnosis, October, 2016; Mastectomy, right breast, Stage 3C, Feb, 2017; chemo, four treatments, then 30 radiations. Anyone else? I don't necessarily feel depressed, but anything sad or infuriating on TV makes me cry. I'm not a big cryer. Thanks.

to @islandelder and @samanthavon and @roch : I'm guessing that the radiation was not a direct cause of the emotional upsets... rather the AI is the culprit. AIs mess with our hormones (and cause a dozen or so other side effects at times). I haven't acquired trigger finger (yet), but I do get infrequent bouts with carpal tunnel syndrome from the Anastrozole. Luckily, I know how to treat it by soaking it in warm water and wearing a wrist brace at night.

As noted a few months ago in this forum, because I am so hypersensitive to most pharmaceuticals, I made the decision to take only half an Anastrozole/day... much to the disgruntlement of my oncologist. I explained that most women give up on AIs after about 2 years because of the side effects. I can manage a half dose for the seven years he has prescribed. In addition, getting one's Vitamin D3 to a high level also reduces circulating estrogen and other sex hormones, according to a Fred Hutchison Cancer Research Center study in 2016. I don't mind taking 2000 IUs of micellized D3 with the half dose of Anastrozole to achieve the goal.

For those whose hair may be thinning... my oncologist prescribed 50 mg/day of Biotin (50,000 mcg) for me when I was post-chemo. My hair has come back thicker than before chemo. I recently reduced the dose to 10 mg, which is still a lot. [A word of warning: if your doctor ever decides to test your thyroid, stop taking the Biotin a few days before the test or the result will imply that you are hyperthyroid which causes all sorts of pandemonium. It's just the Biotin messing with test.]

For the emotions component of estrogen reduction, the remedy which seems to suit me best is good ol' exercise... at least 4 times a week I do a fast mile walking on the treadmill which is about all I can handle with the chemo-induced peripheral neuropathy... but it does the trick for mesamanthavon I'm guessing that the radiation was not a direct cause of the emotional upsets... rather the AI is the culprit. AIs mess with our hormones (and cause a dozen or so other side effects at times). I haven't acquired trigger finger (yet), but I do get infrequent bouts with carpal tunnel syndrome from the Anastrozole. Luckily, I know how to treat it by soaking it in warm water and wearing a wrist brace at night.@

As noted a few months ago, because I am so hypersensitive to most pharmaceuticals, I made the decision to take only half an Anastrozole/day... much to the disgruntlement of my oncologist. I explained that most women give up on AIs after about 2 years because of the side effects. I can manage a half dose for the seven years he has prescribed. In addition, getting one's Vitamin D3 to a high level also reduces circulating estrogen and other sex hormones, according to a Fred Hutchison Cancer Research Center study in 2016. I don't mind taking 2000 IUs of micellized D3 with the half dose of Anastrozole to achieve the goal.

For those whose hair may be thinning... my oncologist prescribed 50 mg/day of Biotin (50,000 mcg) for me when I was post-chemo. My hair has come back thicker than before chemo. I recently reduced the dose to 10 mg, which is still a lot. [A word of warning: if your doctor ever decides to test your thyroid, stop taking the Biotin a few days before the test or the result will imply that you are hyperthyroid which causes all sorts of pandemonium. It's just the Biotin messing with test.]

For the emotions component of estrogen reduction, the remedy which seems to suit me best is good ol' exercise... at least 4 times a week I do a fast mile walking on the treadmill which is about all I can handle with the chemo-induced peripheral neuropathy... but it does the trick for me.