Should I stop taking anastrozole at 77 due to joint pain and side effects?

I am 59 and I choose to never take them. I am confident in my decision. My breast surgeon was actually ok with my choice. My cancer was small & slow growing. I did a double mastectomy. Oncology could not answer common sense questions for me. So why would I trust them that this was for me? I do not think it’s one size fits all. It’s individual based on each case. Best of luck!

Thank you Judith. My cholesterol is up and I’ve gained weight which I didn’t need on the anastrozole, and they tell you to maintain a healthy weight.

Yes absolutely' I had to make that decision to get off of that anastrozol it was causing me having mood swings that were so bad I was so out of control I could not get a grip on myself my attitude my demeanor my mood swings was so bad towards my significant other it begin to scare me and once I brung it to my doctor's attention and she tried me on a new cancer therapy medication I am doing just great!

Glad you are doing well Carmen

This sounds like a really challenging situation where quality of life concerns are weighing heavily on treatment decisions. Many people in this community have faced similar dilemmas about continuing hormone therapy when side effects become significant. It's encouraging to hear from others who understand how difficult these decisions can be, and this type of discussion often helps people feel less alone in weighing their options with their medical team.

I took exemestane for 10 years with minimal—or at least tolerable—side effects. A friend of mine was on tamoxifen and had a tough time so they switched her to exemestane and she did ok on that too…so don’t rule out trying another drug. Unfortunately, after 18 years, I now have metastatic breast cancer and am having to get used to a whole new set of drugs 😞.

I was diagnosed with MM 15 months ago after fracturing my back 2 times a year apart, and then my sternum a year later. Two weeks after my diagnosis I began chemotherapy and after my second treatment my legs had swollen so bad I couldn’t walk shortly after that I couldn’t eat and my oncologist just kept pumping me with chemo. My potassium dropped really low (1.5-2.0) I was spending my entire day at chemo getting potassium infusions. The oncologist wasn’t the least bit concerned about the fact that I couldn’t walk or eat. She’d say well you’ve got to be eating and walking in order to get the sct. Needless to say this went on from June until October with me spending more time in the hospital than at home. Coming home from the hospital in October my husband and I made the decision to stop chemo and change oncologist. I had gone 4 months without eating surviving on sprites and water. My new oncologist said my health was too severe for chemo and the outlook was slim. Still in and out of the hospital until the first of may. I had a feeding tube put in and has since been removed. I’ve lost over 100 lbs. two weeks ago was told my mm is in remission and started back on a lighter dose of chemo last week. This is the longest period of time I’ve been out of the hospital at one time. I still can’t walk without a walker as of yet. And not sure how long it’s going to be before I get some sort of a normal life back. With that being said my oncologist says I still have a lot of healing to do from my first round of chemo but from my first visit up until now he’s very pleased at how far I’ve come because he wouldn’t have expected that when he first saw me. World Rehabilitate Clinic played a significant role in my healing process. This is a horrible disease my prayers are with you all.

Carol S. I’m sorry you are dealing with MBC now. Can I ask what your initial diagnosis was and treatment 18 years ago? How was your current disease diagnosed? Hoping your new treatment goes well!!

So sorry to hear that, Carol 😞

Rebecca, I’m so proud of you for taking your life back. That first oncologist is an example of why I have such low trust in the medical establishment. If you had not found a different doctor, you probably would not be alive now. Even with the best doctors, however, you still have to do your own research and be your own advocate. While you’re one of many patients they’re juggling, your health is everything to you.

I too was on exemestane on for almost 4 years am supposed to be on it for one more year but took myself off too Joint pain bad enough that I had to quit my job also headaches really bad weight gain and bone density problems The cancer will not kill me this medication will I also tried to kill myself due to the meds also I was so depressed I made up my own mind to go off

Wendy S. My initial diagnosis in 2007 was lobular carcinoma was Stage 2B (but later they said it probably wasn’t a b). I had a lumpectomy, 4 lymph nodes removed, one round of chemo (which was a judgement call), and I had what we thought was inactive diverticulitis but it turned out the chemo made it flare up, my colon perforated, I was in the hospital for 2 months with a half dozen emergency surgeries and a colostomy (which, thank goodness, was reversed a year and a half later), and also 33 rounds of radiation (only side effect to that was fatigue that took a fairly long while to resolve. Exemestane (Aromasin) was relatively new at the time and being recommended for post-menopausal women. When I first started, they said it would be 5 years, then new guidelines suggested up to 10. I wanted to give myself the best shot so I kept taking it. Only side effects were joint stiffness in my knees (but I’ve had arthritis since childhood because of rheumatic fever so it wasn’t that awful), I gained some weight (which came right off as soon as I got off the exemestane, I didn’t sleep well (tho I’ve never slept well anyway), and I got cataracts relatively young and now they say the drug can induce cataracts (again…always had bad eyes, and I got the cataract surgery and now my eyes are perfect, so hard to say whether it was the exemestane that caused it). Once I finished the radiation, all my mammograms and breast Mris were fine and I thought I was good for life. About a year ago I started having some back issues and side issues and thought it was a flare-up of the costochondritis I’ve had before. I had an allergic reaction to the NSAIDs the doctor recommended, and I was also losing weight. They thought maybe I had Type 2 diabetes because my A1C was slightly higher than normal so they did a CT scan and bone biopsy, and well, here we are. Metastatic breast cancer to the bones. Just had my quarterly CT scan this morning and am praying everything is stable or improved. I’m taking Ibrance and Itovebi, Metformin and jardiance (the Itovebi raises blood sugar, monthly Fulvesterant injections, and quarterly Zometa infusions (a bone-building drug. Had very few side effects to the Ibrance, fulvesterant, and Zometa..almost felt normal-ish. The Itovebi though raises blood sugar, gives you mouth sores and dry mouth, and diarrhea. They lowered the dose for me and it seems to be improving, side effect wise), and all my blood work shows the cancer markers have gone way down. Just hoping for the best!

I tried three different meds I just feel better off it I too have a lot of low bank pain has X-rays shows bone deteriorating same with my neck But I have rib pain also my left rib sticks out far than my right one after my macestomy and pain under my right upper rib cage but no seems to think anything is wrong just in pain

I am also 77 and was diagnosed and treated with a lumpectomy a year ago. In went on Letrozole in January 2025 and had horrible side effects: terribly disrupted sleep, systemic tendinitis that was almost paralyzing, unable to walk or exercise, bone and muscle pain. Tried Anastrozole and it was no better, plus my blood sugar levels skyrocketed to dangerously high numbers I had never seen before. I went off both, and am Not taking the third AI option. If this is the best we’ve got, after 60 years of The War on Cancer, we’ve got a long, long way to go. On the other hand, because I got a timely mammogram, even at 76, it was caught pretty early and the prognosis is pretty good. Net/net, the oncologist didn’t oppose my going off of it. She was probably thinking that, at 77, early breast cancer wasn’t the bullet with my name on it. On the other hand, Mom lived to 96.

Sarah, I switched from AIs to tamoxifen, and the joint pain is WAY better. I don’t think it has any effect on sugar levels, at least not that I’ve seen. I couldn’t agree with you more. It’s time they come up with something other than endocrine therapy for us. It doesn’t kill the cancer, anyway. It just tamps it down as long as you’re taking it. And it really effects quality of life til you’re off, so the balance goes to being happy rather than miserable, in my opinion.

Jennifer, I think it is very important to discuss with your medical oncologist prior to making the decision to go off of anastrozole. It sounds like it isn’t the right medicine for you, but perhaps there is another one that would work better. I have only been on a anastrozole for a short period of time and have had no side effects at this time. As I understand it from my oncologist, it really depends on the type and stage of cancer that you had as to how critical it is to be on a medicine like that. Best of luck to you and hope you feel better soon!

Yes, I just weaned myself off due to all the bad side effects. My Dr gave me a new prescription, but it is just as bad. I'm 67 and don't plan on going back on that type of medicine

Goes to say, your the best person to say it it's working or if you even want it.

Yes I was on anastrozole then 2 more estrogen blockers after that. All those type of medications have the same side effects. The joint pain, stomach issues, liver and heart. After almost a year I too have stopped taking the meds… I’m 67 and I need to have quality of life also. Those blockers are supposedly to avoid getting breast cancer again, but what they don’t really tell you is that you can still get other types of cancer…

Took Anastrazole for 1 1/2 years and Letrozole for 2 1/2 years (4 years total) for diagnosis in 2020 of stage 1 Lobular carcinoma right breast - lumpectomy & 16 rounds of radiation. I got permission to come off a year early due to issues with joint pain, high blood pressure & cholesterol (now take three prescriptions for that). It is a personal decision as to what quality of life you wish to live being a factor. I feel better after stopping.

I was diagnosed in 1/2020 had radiation and chemo. Stage 4 . Started anastrazole in 2021 and stopped because of joint pain. I'm still here but receive infusion every 3 weeks

I was diagnosed in 1/2020 had radiation and chemo. Stage 4 . Started anastrazole in 2021 and stopped because of joint pain. I'm still here but receive infusion every 3 weeks

I was diagnosed in 1/2020 had radiation and chemo. Stage 4 . Started anastrazole in 2021 and stopped because of joint pain. I'm still here but receive infusion every 3 weeks

I was diagnosed in 1/2020 had radiation and chemo. Stage 4 . Started anastrazole in 2021 and stopped because of joint pain. I'm still here but receive infusion every 3 weeks

I was diagnosed in 1/2020 had radiation and chemo. Stage 4 . Started anastrazole in 2021 and stopped because of joint pain. I'm still here but receive infusion every 3 weeks. Mets to brain