Concerned about the side effects of anastrozole

I am crying as I write this because you capture perfectly how I feel on Anastrozole. I don't even recognize myself in the mirror - weight gain, thinning hair. Plus, I have raging insomnia that leaves me tired all the time. I find that oncologists, naturally, just care about the cancer returning and downplay the side effects. That then leaves one feeling so alone, like a failure if you experience side effects that they minimize.

Oh, you are not alone! Almost 2.5 years on this drug and anxiety & depression are significant side effects... you begin to feel like "why can't I just pull it together?" but it is very real. Not sleeping soundly doesn't help either. I try to meditate but I'm not that good at it. I also use an essential oil diffuser at home and find that some of the anti-anxiety blends help a little. Worth a try and diffusers are inexpensive. All the best to you.

Do you mind me asking what your levels are? Thanks.

Very true on the hormone tests only showing that moment in time on your hormones but my levels have stayed consistent with the past 6 tests. I am post menopausal (by quite a few years now) and I think once you've reached that 'milestone' the levels stay pretty consistent. If you can't get an oncologist to test your hormones, perhaps your GP would be willing or an OB/GYN. No harm in watching those numbers to get a baseline. I think hormones are so overlooked over a woman's lifetime and such a big contributor to so many diseases and conditions. Hugs to all....

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!

Sue Ellen,
Following are the dates of my follow-up scans.
Jan 2020 - Lumpectomy
Feb 2020 - Bilateral MRI
April 2020 - Mammogram & ultrasound
October 2020 - Mammogram and ultrasound
Feb 2021 - MRI
May 2021 - Mammogram & ultrasound
Feb 2022 - MRI
May 2022 - Mammogram
Feb 2023 - MRI
April 2023 - Mammogram and ultrasound
I have no idea if this number of scans is normal or not. I have a primary immune disease and I had a cancer that was very rare but is common to recur in the same place.
Going an entire year without a scan seems like a long time. What about your other breast?
I also have dense breasts and 2 months after having a 3D mammogram that I was told was negative I had an ultrasound that showed a 2 cm tumor. Maybe you could get a second opinion regarding follow-up scans.

This is helpful information. I have most of the side effects and have been managing as best I can. My bone doc told me not to take a holiday and has not talked to me about the other types of drugs. I have 8 months to go and maybe that is why. Does anyone know how long the side effects last after you quit this drug?

Hi- I've been on Letrozole for 3 months (lumpectomy for 2 cm Lobular, followed by radiation in January) and really starting to have the joint pain you all have referenced. The areas I have some arthritis (wrist, and neck) are most painful and I try heat upon waking. Once I get moving pain improves a bit. Have any of you tried glucosamine chondroitin supplements? I'm honestly so overwhelmed in regards to supplements - I will also add tumeric. I take 2000 D3 along with vitamin K as have osteopenia and try to get calcium diet as I've read that calcium just isn't all the bioavailable. However I have read Algae Calcium may be better absorbed?? Thanks for sharing and does take a village.

My oncologist at Dana Farber never mentioned any supplements other than the D3 and calcium as have osteopenia at 57 yrs.

Could any of you weigh in follow up scans. My onco feels that any scans before one year post surgery are not helpful so I only have a diagnostic mamo scheduled in October ( a year post surgery). I have dense breasts but mammo last year did pick up lobular but I do fear it had been there a while as the radiation onco said it was hiding behind a fairly large benign lump (had aspirations on that in the past a few times).

Do I beg for an MRI? Anxiety creeping up!

These Estrogen Blockers have lots of symptoms - not everyone will have them all. But basically, if you remember how you felt during your menopause, you may be going through similar symptoms again, because menopause is when most of your Estrogen goes out of your system. After that you have some Estrogen left in your body and the Estrogen Blocker is now blocking what's left. Or almost all. Hence, all the hot flashes etc. I would check with your doctor to see if one of the other two Estrogen Blockers would work better for you. Also, ask your doctor if you can take a two week break from the pills - some people did this to give their body a break! I think you might need a break to relax and raise your spirits. And remember, nothing lasts forever. Things will get better.