Any long-term success stories from those NOT taking hormone therapy?

Posted by lj22 @lj22, Mar 30, 2025

Hello all, I'm fairly new to this forum. Have previously described my case, early 60's, Stage 1, HR +, Her2-, lumpectomy and now radiation. Soon, I'll need to make a decision about whether to take hormone therapy. I've ruled out Tamoxifen, and if AI (Anastrozole), I would need Zometa due to osteopenia. I am otherwise healthy and take no other daily meds. I am also looking into natural AI's in foods and supplements. (Have reviewed Predict model, showing relatively high survival rates, but unclear on recurrence rates from his model.)

Anyone in a similar situation who has decided not to take AIs, and is doing well long term? Would like to hear your experiences. Many thanks. LJ

Interested in more discussions like this? Go to the Breast Cancer Support Group.

There is an article from BBC that menopause is linked to changes in the brain similar to Alzheimer's. So my question is since Estrogen is creation's protection against things like Alzheimer's is that the reason why women get brain fog when on AI's. What if AI's lead to permanent dementia onset since one must be on them for 5 years? Just a curious question

REPLY

And there is an article in JAMA suggesting AIs reduces risk of alzheimer in women 65 to 74 depending on races.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2821165
So many conflicting articles out there!

REPLY

I too wouid like to hear abt recurring rates on zero! I had stage lumina A Onco Score 3 E&P positive 5 days target radiation finished Oct ‘25 decided to not take any hormone receptors from what I read the side effects are more severe then needed! Exercise Diet Check ups for me.

REPLY

I agree with your statements. I did take Anastrozole for 5 months and had side effects all about inflammation in my hands. I had been advised that some of the side effects would be similar to going through menopause. That didn't happen to me. The inflammation was so severe that I couldn't make a fist which prevented me from doing a lot of thing I love to do. Like gardening, walking my dogs, working out, opening any kind of bottle, etc.

I had stage 1 with surgery to remove the lupe, margins all clean, negative on all lymph nodes and had chemo for 3 months followed by 20 sessions of radiation. I'm 71 and want to enjoy each day.

I ended up going to a hand specialist who was able to solve my finger/hand problem.

REPLY
Profile picture for brooklyn22 @brooklyn22

I too wouid like to hear abt recurring rates on zero! I had stage lumina A Onco Score 3 E&P positive 5 days target radiation finished Oct ‘25 decided to not take any hormone receptors from what I read the side effects are more severe then needed! Exercise Diet Check ups for me.

Jump to this post

@brooklyn22 I'll just say what you've probably heard a million time already...most women do fine on hormone blockers. It's the minority of women who suffer very real, awful side effects that speak out in online discussions about their issues. And yes, it sounds scary. The women who are doing ok have largely moved on & are out living their lives. I've just started taking 10 mg (half-dose) of Tamoxifen & doing fine so far. I'd suggest you at least try a hormone blocker & see how you do. They do help keep the cancer away, that's a proven fact.

REPLY
Profile picture for jmab @jmab

@brooklyn22 I'll just say what you've probably heard a million time already...most women do fine on hormone blockers. It's the minority of women who suffer very real, awful side effects that speak out in online discussions about their issues. And yes, it sounds scary. The women who are doing ok have largely moved on & are out living their lives. I've just started taking 10 mg (half-dose) of Tamoxifen & doing fine so far. I'd suggest you at least try a hormone blocker & see how you do. They do help keep the cancer away, that's a proven fact.

Jump to this post

@jmab I have thought abt trying a hormone blocker on ve heard abt the low dose Tamoxifen- I think with mine they wanted me to take Aromistase -it is 6 mos since surgery etc -my genomic testing Onco score 3 it was slow growing with such low numbers I am at crossroads- to see an oncologist constantly and yes the side effects are real on these hormone receptors I’m still thinking about it all and wish everyone the best best outcomes!

REPLY

I had hormone positive breast her2 negative. 1 lymph node positive age 58 now 61. Post Menopause. I have been 1mg of anastrozole since Aug of 2022. My ocotype 20 ki67 10 kinda low to medium. Had lymph and reconstruction on both breast
No chemo
Just radiation
I have been fine. The occasional fatigue and hot flashes I can live with if it helps keep my reoccurrence on the downward path. Still young and want to enjoy my life to at least into my 80’s or so

REPLY
Profile picture for brooklyn22 @brooklyn22

@jmab I have thought abt trying a hormone blocker on ve heard abt the low dose Tamoxifen- I think with mine they wanted me to take Aromistase -it is 6 mos since surgery etc -my genomic testing Onco score 3 it was slow growing with such low numbers I am at crossroads- to see an oncologist constantly and yes the side effects are real on these hormone receptors I’m still thinking about it all and wish everyone the best best outcomes!

Jump to this post

@brooklyn22 I'm no expert, but I believe knowledge is power. First, the onco score indicates whether or not chemo will be helpful. That's it. (Maybe you're thinking of your Ki-67 score, which measures growth rate?) But either way, you're wise to be exploring all options before making a decision. Yes, low-dose (10 mg) Tam is currently being evaluated in trials & my oncologist believes research is leaning toward approval. It also protects bones. Hope you find a good solution that works for you! We each have to find what we're comfortable with, giving our bodies the best chance.

REPLY
Profile picture for jmab @jmab

@brooklyn22 I'm no expert, but I believe knowledge is power. First, the onco score indicates whether or not chemo will be helpful. That's it. (Maybe you're thinking of your Ki-67 score, which measures growth rate?) But either way, you're wise to be exploring all options before making a decision. Yes, low-dose (10 mg) Tam is currently being evaluated in trials & my oncologist believes research is leaning toward approval. It also protects bones. Hope you find a good solution that works for you! We each have to find what we're comfortable with, giving our bodies the best chance.

Jump to this post

@jmab I'm on Anastrozole and a bit worried about osteoporosis as all the research I've read states that if I take AI's, I'm at risk for developing osteoporosis. I'm very active doing strength training, weighted vest walking and jump training. My next Dexa is in July. I'm wondering if you know of any research which indicates that if we exercise enough, will it become a protective factor to guard against losing bone density? Can we counteract the bone loss from AI's with weights?

REPLY
Profile picture for brightlight66 @brightlight66

@jmab I'm on Anastrozole and a bit worried about osteoporosis as all the research I've read states that if I take AI's, I'm at risk for developing osteoporosis. I'm very active doing strength training, weighted vest walking and jump training. My next Dexa is in July. I'm wondering if you know of any research which indicates that if we exercise enough, will it become a protective factor to guard against losing bone density? Can we counteract the bone loss from AI's with weights?

Jump to this post

@brightlight66 I think the short answer is "yes"! I'm no expert & because I had already taken Prolia & Reclast over the years (I'm 72), I was prescribed half-dose Tamoxifen after my cancer diagnosis in order to protect my bones. But it sounds like you're doing a really amazing job with your exercise! (Good for you!) And each person is different. I've read that taking calcium & Vitamin D can also help. See how your dexa exam looks in July. Worse case, you can add an osteoporosis med, but I have a feeling you won't need to. I admire your spirit! I do (level 1) pilates 3x/week but could work harder. Let us know how your dexa turns out & best wishes!

REPLY
Please sign in or register to post a reply.