Best Of

Reporting back in a few months later to follow up on how exemesthane worked for me!

My oncologist at Fred Hutch assured me that among aromatase inhibitors, exemesthane was the best—the most effective with the least side effects. I went into my trial of exemesthane with great hopes for success and a good deal of optimism.

I also went in with open eyes and an understanding of what side effects to look out for. Sadly, they hit me like a wall. I started the drug in early July and stopped cold August 9. I took the full daily dose, and my oncologist determined, given my side effects, that any smaller dose would be just as detrimental. It is said that the third AI one takes is meant to be most tolerable, but I think this is because by the third prescription you are already so devoid of estogen you don’t feel the side effects so much? I am 50 and experienced menopause somewhere between 48 and 49. Apparently being newly post-menopausal can also influence the severity of effects. And wow, am I the poster child for side effects!

My side effects included neuropathy (lack of feeling and pins and needles) in my hands (which is rare) and thinning skin within the first week (I kept skinning my knuckles doing routine, soft chores like folding the laundry). I also had a persistent runny nose, fatigue, and the start of depression. I developed hand pain every evening, with trigger fingers each morning. My hands were swollen so much I felt I could not hold a pencil or a steering wheel, and the the trigger fingers were very uncomfortable. This would wear off during the day, mostly with a hot shower. I started bruising easily. Night sweats and hot flashes during the day returned, though not as bad as with Tamoxifen. Insomnia, diarrhea, and an aching left ovary combined with a general weakness in my hands and hip pain followed. My jaw began to pop, something that it had never done before. I contracted angular chelitis, a fungal infection of the lips sometimes associated with cancer treatments. I suppose due to low white blood cell counts. This traveled to my ear lobe before I got it under control with OTC fungal lotion. Painful but not noticeable or catching for others, thankfully. Never had it before in my life. I was also becoming quite anxious about bone loss given that I was experiencing so many side effects. Not all of us have bone loss on AIs, but with my osteopenia, I was worried. And anxious that for 10-20% of women, bisphosphonate injuections fail to rebuild bone. To add insult to injury, I thought I had contracted a UTI, which is common on AIs, but it turned out to be a phantom one with no infection. It is OCtober 16 and I still am having this side effect. I have a referral to a urogynecologist, as my oncologist couldn’t quite address the odd symptoms I was experiencing (which I only feel on my left side, for some odd reason). It is a constant urgency in the pee department that, at its peak a few weeks ago, was near incontinence. I have been managing it with NSAID over the counter drugs as needed. As of today, everything but the hands and phantom UTI have cleared up. I am getting compression sleeves for the day and braces for the nights to see if I can’t help alleviate these symptoms. My oncologist believes this will clear up. In some cases, damage like this can be permanent or result in the need for trigger finger or carpal tunnel surgery.

So, I did stop the drug and am now not on any cancer prevention anti-estrogen drugs. I can still elect to try a new AI should I choose, but so far the impacts on my quality of life have been extreme considering I have a 8-12% chance of recurrence in the next 9 years. I do understand that recurrence rates go up as we age, but we are learning more and more about that with precision oncology. But I also bear the weight that in oncology, even 1% is significant.

DO NOT STOP TAKING YOUR MEDICATION without telling your oncologist. This is not an endorsement for anyone to discontinue care. I had to weigh the potential damages to my body against a low risk of recurrence. Your risks are different to mine, no matter how similar we may be on paper. But DO TELL YOUR ONCOLOGIST if you suspect any new thing you are experiencing to be a side effect of your medication. Your situation may be that it is fine to risk the need for hand surgery (which can be very simple and routine) against cancer recurrence! I simply did not feel it was right for me. I was disappointed my oncologist didn’t offer more support for prolonging my anti-cancer medication. Perhaps it is because of the multitude of side effects I had that made her pause. The oncologist-heamatologist I saw for a telehealth visit within the practice of my regular medical oncologist did not think it would be advisable for me to try a lower dose or really to ever take exemesthane again. She did, however, give me a letrozole prescription, should I choose to try another AI. At the moment, that sounds too much to bear, given that even months later the sidwe effects from July still cause me daily pain and discomfort. We are fighting cancer here, but quality of life also matters.

I am about to start a PhD at 50 that will span global hemispheres. I have a low risk of recurrence, despite the numbers adding up over time. I also am stying abreast of technology and medicine that is evolving. Liquid biopsy may, in a few short years, be able to help us know better which of us are at risk of recurrence, which for hormone positive cancer is still a mystery. I will continue to get my mammograms, scans, and ultrasounds, as well as my physical exams. And I will exercise and take care with my diet and minimize my alcohol intake. I am deeply disappointed I was unable to tolerate exemesthane and tamoxifen. I envy those of you who find it tolerable.

I continue to urge you to find oncologists who understand you and work with you. Mine is good but not as helpful or encouraging as I would like, but I stay with this one as her staff are very useful and her clinic on time and state-of-the-art. Just once I would like to have an oncologist look me in the eye and say: “Your case is low-risk. Here are your options. This is what I would do.” Ironically, the very first oncologist I saw just as I was moving away from the city he practiced in was the most helpful that way. He said I most likely got this cancer because menopause caused my estrogen to spike trying to get my ovaries to release the eggs that were not there. This is conjuncture. But it helps frame the disease for me. I have no genetic or lifestyle factors that predispose me to breast cancer that we know (and correlation isn’t causation, so don’t be fooled!). He said I’d be fine. U’d have surgery and take some pills, and I’d be good. He as a very kind man. I hope he was right. He seemed very assured this was going to be the case. Make sure your oncologist is there for your whole person. You are one of a kind, and deserve the best care, no matter your diagnosis. That matters at the end of the day. You need to feel human and respected after you've been to to doctor. Make sure you get that experience. And do something nice for yourself today. Get off this site and go be alive!

Thank you for sharing your experience with us. I didn't go the route of endocrine therapy, did not do radiation, only surgery and scans every 6 mo. That was what I opted for. I was similar age when I got the breast cancer diagnosis of stage 1, grade 1, ER/PR+ and HER2-. That was in 2017. I know probably alot has changed for treatments. But I told my MO at the time that I didn't want to use all my 'tools' from the toolbox if the cancer returned I would use them then. I asked him if there were any studies on stage 1, grade 1 patients …..it was a tough decision for me to only have surgery. Going against what the medical professionals were telling me to do ie: endocrine therapy and radiation was not easy. But so far, I am cancer free, 8 yrs cancer free…..just thought I would share my experience here too in case anyone was interested.

Know How you feel. I read alot of publications and books and felt informed. Working against the usual medical advice has been hard but I am happy with my choices. I probably would've forgone the radiation actually and just had the lumpectomy, but felt it wss the half-way house.

I'm on MRT for perimenopause and there was no way I was coming off it and then going on Tamoxifin.

Recommed to all to read Estrogen Matters. Contains tones of research of HRT, endocrine therapy etc post cancer diagnosis.

Helped me make the right choice for me, that I can live with.

We all need to make the right choices for ourselves and know that everyone's cancer is a little bit different.

Hello, I'm new here and came here to get some further information about estrogen blockers and whether or not to take them.

I was diagnosed with Stage 1 Estrogen +, HER2 - invasive ductal carcinoma in my left breast on July 14, 2025. It was only detectable with a mammogram and would not have been found otherwise. The tumor is not gene related and I don't have the BRCA gene.

I had a lumpectomy on August 14, 2025. Tumor was 4mm and lymph nodes are clear. I underwent 10 treatments of targeted radiation for 10 minutes each, and finished that on October 21, 2025. I turned 60 in September of this year and am post menopausal. I am very thankful to have caught it so early.

My oncologist said the next step is the estrogen blocker. I am not able to take Tamoxifen because I have Factor 5 Leiden blood mutation that puts me at higher risk for clots. My immediate gut reaction was to not take the Letrozone that he wanted to prescribe. We had a long discussion about it and I finally agreed that I would give it a try. Ten days in and I talked with him to tell him that the hot flashes were back with a vengeance, my mood was either irritable or crying, or trying to NOT be either of those (as I burst into tears with him on the phone), all worse than when I actually went through menopause, and that I didn't want to do it. He said he could give me MORE meds to help with hot flashes, but we agreed that I would just stop, at least for now. I will see him again for a previously scheduled appointment and labs in a few weeks.

So I am here in search of experiences with and without taking the blockers. I feel better not taking them, and I really don't want to, but then I feel like I SHOULD be, regardless of whether or not I should. I hope this makes some kind of sense! UGH