Has anyone stopped taking hormone therapy due to severe side effects?

12-20-22 My dx: left breast. - INVASIVE DUCTAL CARCINOMA, COMBINED HISTOLOGIC GRADE = 2 - NO CARCINOMA IN SITU IDENTIFIED - NO LYMPHOVASCULAR INVASION IDENTIFIED - BIOMARKERS: ER - POSITIVE (>95%, STRONG), PR - POSITIVE (>95%, STRONG), HER2 - NEGATIVE (0). Lumpectomy. Lymph nodes negative. 13 Radiation treatments. They were able to miss my heart. I took letrozole for about 7 months. Same— could not hardly walk and blood pressure sky high. Switched to Aromasin. Same thing. Stopped and the tried again. Made decision to stop for me but I am told is different for everyone. Others may have better Luck. FU mammogram at 6 months was clear. Next visit Dec2.2024. Fingers crossed.

Maryellen, That’s me! Same dx, same onco score. Had lumpectomy, now doing 3 weeks radiation and dr wants me to take hormone blockers next 5 years but I have osteoporosis and those pills deplete bone density. I’d rather take my chances and live my life. Yes it could recur, but taking the pills is no guarantee it won’t come back and at 72 I’m more concerned about falling and breaking a bone. Even my oncologist told me my bone loss is more of an issue than the breast cancer…yest she still wants me to take the pills. I don’t get it.

Things I wish I had done before treatment. 1. Hormone level test before Arimedex. Then level test after 6 months. 2. Bone density test before Arimidex and again at 6 months. Just to see if it is even changing my hormone levels and the amount of damage caused to my bones. This information allows me to make a more informed decision on facts.

I’m wondering if anyone has tried tamoxifen 10 mg. I’ve tried two Aromatase inhibitors and was not well on either. Severe joint pain, night sweats and sleep deprivation. Oncologist is suggesting tomox and maybe I could try 10 mg as I’m unsure about taking anything else. Just curious.

Flora I was prescribed Exemestane 25ml. I haven’t even tried it yet. I was on 2 other hormone blockers and boy o boy they really destroyed me. I’m so torn between my quality of life or the outcome from these meds. I honestly don’t know what to do 🤷‍♀️

Hi Peggy. I’m the same. I’ve been months trying to make this decision. Thought I had made it. Previous oncologist told me I was low risk and he would tell me if he thought I should take the tamoxifen so I was comfortable not taking it. He had given me a script for 20 mg in case I wanted to try. When I next visited I explained my decision not to go on the meds including weighing what he said to me — said this to a resident. The doc came in with the resident and the new oncologist and pushed me hard to take the tamoxifen. I was so blown away by the the abrupt shift in position. I couldn’t really respond at the time and left with the same script. I’ve been struggling with what to do since. The new oncologist said she would respect whatever decision I made and would work with a lower dose which I had asked about. It scares me to take it and not to take it. It helps to know you are here and others are here trying to get through this indescribable I’ll see and we are not alone. I’m good most of the time but two years after the diagnosis I still get overwhelmed. Thank you so much. Good luck with your decision. It’s not easy and so personal. Quality of life is so very important. Big hug.

Awe thank you so much Flora.. I just need to hear that I’m not alone with this decision.. I’ll be 2 years in February. Been through 2 different pills. I wish that someone could just tell me.. take and try the Exemestane.. this is such a head trip for me right now..

Flora, I just responded somewhere in the App about my experience with Letrozole, Exemestane and 20 mg Tamoxifen. My dose was lowered to 10 and it is tolerable. For me, they are very hard on the body and I feel this has been the toughest part of my breast cancer journey so far. I wish I had the courage to say No to the hormone therapy!

I took Arimidex/Anastrozole for about 2 months after lumpectomy and radiation. Horrible side affects! Feet pain ...hip pain emotional wreck! I stopped cold turkey. Oncologist prescribed Letrozole... I got it filled took it home put it in a drawer and have never taken it. I was stage 1 very small....no lymph nodes involved. I quit going to oncologist. I only see my breast surgeon and gynecologist once a year and have mammogram once a year. My breast surgeon whom I love and trust...told me to take an 81mg aspirin everyday since not taking any hormone blockers. That was 4 years ago and praise the Lord I am still cancer free. Diagnosed at 58 am now 62. Who knows what the future holds....only God so I'm trusting Him ..and living the best healthy...happy Life I can! ❤️❤️

I tried 2 hormone blockers and I felt awful it's so good to know that I am not alone and others are having issues with these drugs. I feel like they need to lower the dose and strength of these so that more women can handle the side effects. I'm wondering if my doctor will suggest tamoxifen. I was diagnosed March of 2024 had lumpectomy surgery in April and just finished radiation in July. Stage 1 b with no lymph node involvement and onco score 12. I do agree that these pills are possibly the hardest part of the journey. Especially because they want you to take them for 5 years or more.like others have mentioned quality of life is so very important!

So new events since my post to Flora. I had some water retention in my lower legs and ankles. I was told to stop the Tam (10 mg) yesterday and sent immediately to hospital for an ultrasound of both legs to rule out blood clots . No clots thankfully but the report recommends I see a cardiologist! I won’t see my oncologist until 8/27 at which point I need a very candid discussion. I was 66 when a 5 mm grade 1 tumor was found. ER/PR +. HER-. Margins clear and no node involvement. Surgery, 6 wks of radiation and 2 years of struggling with these hormone blockers. I need the courage to say ENOUGH! BTW, I don’t believe I got an Onco score? Does everyone get that?

Maggie J I was told the tumor has to be at least 5 mm in order to have enough specimen to send to California lab for Oncotype genetic testing. It cost about 3000 dollars and my insurance paid for it

Thank you, I’ll check my chart again.

Maggie thanks for sharing the update about the 10 mg tamoxifen. So sorry to hear about the potential blood clots and extremely glad to hear you are clear. What the hey about the cardiologist? Keep us posted please. My lump was about the size of yours and I had an Oncotype done. In Canada it’s covered by our insurance. My number was 18 and I’m grade 3 (invasive) but numbers didn’t indicate chemo. Remain very unsure about the tamoxifen.

I’m taking 5mg tamoxifen and run the gamut of side effects to heart, lungs, joints, eyes, jaw, gastro, bladder, and bones. Besides the IDBC I have chronic Lyme. Started with integrative medicine so taking a couple of supplements like prescription magnesium, K12, D3, as well as Chinese herbs and Accupuncture. I have developed serious osteoporosis and because of allergies cannot take the usual infusions or injections. Add another Dr to the list - finally got an appointment with an endocrinologist but not until November. So I’m walking with a weighted vest, 45 minutes of pilates and yoga, eating sardines, and protein and hoping for the best. It’s a job trying to feel well!

I’ve been taking 20mg of Tamoxifen for last two years. I’m currently on a break. I was having severe fatigue, brain fog, leg cramps, joint pain, my hair starting falling out, and bloating (that stomach pooch). My doctor had me stop taking it to see if the symptoms were caused by tamoxifen. After 2 weeks I felt great. The fatigue is what gets me.

After trying 2 aromastase inhibitors I'm going to try 10 mg tamoxifen but I will start slow and not take it everyday day til I see how I tolerate it.

Flora M I take 5mg tamoxifen every day. My oncologist calls it baby tamoxifen. But it’s all I can “tolerate”I’m allergic to most everything so have lots of side effects.

Thanks to all of you for sharing your experiences with tamoxifen. I am pretty much paralysed about the decision. I’m sorry each of you are struggling with symptoms as well. I’ve also been diagnosed with vulvodynia which is related partially to estrogen loss so another reason I am unsure of going back on any of these meds.

I tried 5 mg of tamoxifen and got a headache so I think I am going to stay off the meds for good. Just eat healthy and exercise.

Thank you all for sharing here! Just discovered this thread after asking if anyone here refused hormone therapy. I am 61 and had ILBC stage 1 grade 2, ER positive, HER negative with no node involvement. I had a (double) mastectomy, no radiation and no chemo. My oncotype is 17. Oncologist recommends 5 years Tamoxifen and I am taking some time to think about it. My gut says no to spending the next 5 years with side effects, many of which I have to a lesser degree already. It is about quality of life for sure- but it’s also about taking control of my own health and having agency. I am still kind of scared of course too. Have not completely decided. I think if I was younger, I would def try the medication and do my best to plow through the 5 years. But at this age, I just don’t know. Integrative medicine is much more appealing

Also- 40% of breast cancer patients do not complete the hormone treatment and a third of the people who do, don’t take it as prescribed. It seems like we need better alternatives

Yes Lia E we need choices that don't make us sick for 5 years. I tried 3 and I can't handle the side effects of any so I will not be taking the meds. My Oncotype is 12 and I had lumpectomy and radiation for Invasive ductal carcinoma grade 2 HR positive Her2 negative .....stage 1b. No lymph node involvement...My age is 61

Age 72. Stage 1, lumpectomy, oncology score 1. Just completed 16 rad treatments. Have osteoporosis and just had teeth extracted for full dentures then procedure to shave boney areas on lower gums. Oncologist suggests AI for 5 years and include infusions every 6 months to counteract the bone loss from Pills. But the infusions can cause jaw issues. I’m saying no the pills. Enough is enough! Drs downplay the side effects but THEY aren’t the ones dealing with them.

Sue R I agree about the doctors. They should be honest about the horrible side effects that can happen and do happen to many of us.