Concerned about the side effects of anastrozole

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!

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!

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!

How old are you?

to @gwinter and @cindylb -- My path report for BC was Stage 1, ER positive, HER2+++; ovaries were removed about 10 years ago.

Not to complicate your lives, but here are a few notes from my experience. European oncologists test hormones all the time. It is not standard for American oncologists. I asked mine why that was and was told that each test only gives a reading for that point in time, and that the amount of circulating hormones changes frequently. I suppose that makes sense... I'd still like to be tested and he's not going to it.

Another note: check each of your meds and supplements as to their interaction with hormones. In my case, I was taking a diuretic called spironolactone; it decreases circulating estrogens and androgens. As soon as I started on the anastrozole (I have chosen to take only half a dose/day), I incurred very sore cysts in my breasts and on my ribs. When I switched diuretics, the soreness and cysts disappeared. The oncologist was clueless. Thankfully, I have a GP who works with me. I also take 1,200-2,000 IU of mycillized D3 each day for bone health and learned that it, too, decreases circulating estrogens. There are a number of factors affecting our hormones (and quality of life), and we each must root those out and make them part of the conversation with our oncologists. HUGS!