Concerned about the side effects of anastrozole

Hello - I was diagnosed with Atypical Ductal Hyperplasia (posted a follow-up on the other thread, but see it must have gotten lost in cyber land). I had a stereotactic biopsy and then a surgical biopsy. The pathology came back clear for DCIS. In fact, there were no ADH cells present either which meant those cells were removed during the stereotactic procedure and left me shaking my head over the stress and recovery from the surgery.

So now I am 59 and faced with taking Anastrozole to try and prevent cancer. Due to family history and the ADH, I fall into the high risk category with >30% lifetime risk of developing breast cancer. I won’t take Tomoxifen because I have a family history of stroke. I’m left with Anastrozole as an option but I already have degenerative discs, arthritis, (controlled) hypertension and occasional abnormal liver enzymes. I DON’T WANT TO TAKE THIS DRUG. I’m supposed to start taking it tonight but then realized my oncologist never took a baseline blood for the liver enzymes so I will hold off until I speak w/ her (it’s in her clinical notes but a fairly big over sight if you ask me).I have a 30 day supply and try very hard to just look at this as a “trial”, but it is scary. I don’t have cancer but I have to fill my body with a drug that perhaps will prevent (only) an estrogen fed future cancer, but then maybe I’m taking this all for nothing because I could fall in the percentage of people who never develop cancer (my mother didn’t, but my sister, material aunt and cousin did).

I’m angry. My husband is scared that I won’t feel well. I’m scared that if I don’t take the medication I will regret it. I’m scared that if I do take the medication I will regret it. And though I asked a couple of times, my doctor won’t check my estrogen levels either. I am somewhat bothered by the fact that the FDA has approved the use of this drug to treat cancer, but has not done so for the use of a CPA (chemoprevention agent) for high risk women. I know that, with the support of clinical studies, doctors use drugs for off-label purposes, but it bothers me. Anyway, now I know I am rambling...I just feel that it is all a big crap shoot.

Best wishes to all of you that are dealing with so much...there are some days I feel so overwhelmed by it all it takes my breath away.

I have just started to take Anastrozole after having lumpectomy & radiation for stage 2 ER+ breast cancer with clear lymph nodes.
I also have thalassemia minor & gilberts syndrom.
I’m quite anxious about taking Anastrozole as I’m not sure this is safe for me considering my health situation.

I have been on Anastrazole/Arimidex for one year. I've had some joint pains but nothing unmanageable. I do notice my hair thinning likely due to less estrogen. I have recently been diagnosed with Gilbert's syndrome due to a slightly elevated bilirubin, which is a condition in which the liver doesn't flush bilirubin out sufficiently resulting in yellowing of the whites of your eyes or yellowing skin. I have a question out to my doctor about next steps but would be interested in hearing if any others have had this particular issue arise while on Anastrazole. Best wishes to all of you!

@tamtam24 (((HUGS))). You are not alone. We are all here for you. I’m sorry you are going thru this. I took Anastrozole and had side effects. Took it for 2 1/2 years. Maybe ask your dr to prescribe a different AI or I’ve also hear others here say getting the name brand vs generic made a difference. Talk to your dr and try and get them to listen. Blessings & hugs.

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!