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.

Profile picture for bloncape @bloncape

To lj22,
I thought I'd chime in with my so far, so good cancer journey. In July 2020 at the age of 70, I was diagnosed with breast cancer - Stage 1, Grade 1, HR/PR+, Ki67 less than 10 and no lymph node involvement with clear margins after lumpectomy. I had 16 rounds of radiation. Our cancers were very similar. I also have osteopenia. My endocrinologist said to take whatever medicine was best for my cancer, and he would take care of my bones. He said that I would be needing medicine anyway because I was getting older and my osteopenia would progress to osteoporosis. I took anastrozole every other day for a month, every day for 7 weeks, and then stopped. I had severe side effects resulting a very poor quality of life. I decided not to try exemestane against the strong urging of my oncologist, who did not acknowledge the side effects that I reported, as being caused by anastrozole. About a month after stopping anastrozole the side effects had subsided. I walk every day and try to eat a good diet. My osteopenia has not progressed to osteopenia, as my endocrinologist had predicted. It has been nearly 5 years, since I stopped taking anastrozole. I feel well and am enjoying life.
There are some studies that are finding that the current treatment of early stage breast cancer may be overly aggressive in older women. We must each advocate for ourselves and listen to our bodies. It's true that many women tolerate these drugs well, but many do not. Inform yourself as much as you can. This forum is a very good resource for helping us learn about cancer. Thank you to all who post with your wise words and insight. I wish you all well.

Jump to this post

@bloncape I'm 72, recently diagnosed with stage 1 ilc & after lumpectomy & 5-day radiation, now take half-dose (10 mg) of Tamoxifen which has minimal side effects & hopefully also protects bones. Feels like a good compromise for me. Had to fight for the half-dose prescription. As you say, we're all different beings & all must find our own path.

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 so you’re saying hormone receptors pills keep cancer away if you take them as opposed to not?

REPLY
Profile picture for brooklyn22 @brooklyn22

@jmab so you’re saying hormone receptors pills keep cancer away if you take them as opposed to not?

Jump to this post

@brooklyn22 Just to add in. If the question is do Aromatase Inhibitors such as letrozole and others keep estrogen positive breast cancer from coming back and/or spreading--the answer is yes. Tamoxifen does the same. The odds are different for each person. Or are you asking something different? I've been on letrozole for 3 1/2 years. No side effects. My rare aggressive cancer has not reappeared--a good sign the letrozole is working. (I did not have chemo due to kidney disease). Hope this clarifies.

REPLY
Profile picture for brooklyn22 @brooklyn22

@jmab so you’re saying hormone receptors pills keep cancer away if you take them as opposed to not?

Jump to this post

@brooklyn22 Hormone BLOCKERS reduce rates of cancer recurrance. Yes, absolutely, 100%.

REPLY
Profile picture for Miriam, Volunteer Mentor @mir123

@brooklyn22 Just to add in. If the question is do Aromatase Inhibitors such as letrozole and others keep estrogen positive breast cancer from coming back and/or spreading--the answer is yes. Tamoxifen does the same. The odds are different for each person. Or are you asking something different? I've been on letrozole for 3 1/2 years. No side effects. My rare aggressive cancer has not reappeared--a good sign the letrozole is working. (I did not have chemo due to kidney disease). Hope this clarifies.

Jump to this post

@mir123 Hi, I am so glad to hear that you have no side effect with Letrozole. May I ask how many years you need to take? As you mentioned that you had rare aggressive one So I guess you may need to take up to 10 years? My one was not aggressive that I need to take 5 years. I am on only 6 months with mild side effect and hoping no major one for much longer years. I mean at least for 3 years.

REPLY

Hi, With osteopenia, You don't need to take IV Zometa now. I have one too. My onco Dr. didn't ask me to do anything just change the diet and do weigh bearing exercise. Be aware Zometa has strong side effect NOT everyone can handle it.

REPLY
Profile picture for songfamily2025 @songfamily2025

@mir123 Hi, I am so glad to hear that you have no side effect with Letrozole. May I ask how many years you need to take? As you mentioned that you had rare aggressive one So I guess you may need to take up to 10 years? My one was not aggressive that I need to take 5 years. I am on only 6 months with mild side effect and hoping no major one for much longer years. I mean at least for 3 years.

Jump to this post

@songfamily2025 It's a good question but I have no clear answer. I'm guessing you are right as regards ten years. With each passing year, my oncologist explained, my life expectancy looks better. The two year and then the five year mark both bode well. I don't mind being on letrozole at all. My bone density is still normal. The truth is, I'm very grateful this drug is keeping me going. I'm almost 72, and other co-morbities have made me face mortality in a way that isn't bad at all. I'm really enjoying life, a day at a time. Wishing you all the best, too, in every arena.

REPLY
Profile picture for Miriam, Volunteer Mentor @mir123

@brooklyn22 Just to add in. If the question is do Aromatase Inhibitors such as letrozole and others keep estrogen positive breast cancer from coming back and/or spreading--the answer is yes. Tamoxifen does the same. The odds are different for each person. Or are you asking something different? I've been on letrozole for 3 1/2 years. No side effects. My rare aggressive cancer has not reappeared--a good sign the letrozole is working. (I did not have chemo due to kidney disease). Hope this clarifies.

Jump to this post

@mir123 hi asking percentage rate of taking Aromatase Inhibitors vs Not- I’m going by the science genomic test results my Onco Score (3) Ki67-10 very slow growing I finished radiation Oct ‘25 had post Mamography last month then will do again in July - turned 71 in Dec BRCA Neg- I honestly thought once I had lumpectomy radiation I’m done with the nightmare - I’m still researching natural for E&P positive HER2 - I hear grape seed very good proven - I wish us all good luck in whichever path we are on.

REPLY
Profile picture for brooklyn22 @brooklyn22

@mir123 hi asking percentage rate of taking Aromatase Inhibitors vs Not- I’m going by the science genomic test results my Onco Score (3) Ki67-10 very slow growing I finished radiation Oct ‘25 had post Mamography last month then will do again in July - turned 71 in Dec BRCA Neg- I honestly thought once I had lumpectomy radiation I’m done with the nightmare - I’m still researching natural for E&P positive HER2 - I hear grape seed very good proven - I wish us all good luck in whichever path we are on.

Jump to this post

@brooklyn22 I hope I can explain what I know. You should ask your oncologist for the percentage of risk reduction for the Aromatase Inhibitors with your specific cancer. Let's say there is a 50% improvement with the drugs. But then you need to know what you risk of recurrence/spread actually is. Let's say it is 2%, so the risk reduction is very minor. But if it is 80% the risk reduction could be critical. As I'm no doctor I don't know the exact answer--but your oncologist should provide you with the info you need. It will vary person by person. Also, consider if you re ok with starting an Aromatase Inhibitor and seeing how you do. (I think from your comments you have not yet started?) You can always start and then tell your oncologist you are stopping--or ask to try a different one. I gather about half of women have few or no problems. I've been on letrozole for 3 1/2 years without side effects and good cancer control. I hope you can get some peace mind with this decision. (I found decision making the hardest part, for me, of the process).

REPLY
Profile picture for Miriam, Volunteer Mentor @mir123

@songfamily2025 It's a good question but I have no clear answer. I'm guessing you are right as regards ten years. With each passing year, my oncologist explained, my life expectancy looks better. The two year and then the five year mark both bode well. I don't mind being on letrozole at all. My bone density is still normal. The truth is, I'm very grateful this drug is keeping me going. I'm almost 72, and other co-morbities have made me face mortality in a way that isn't bad at all. I'm really enjoying life, a day at a time. Wishing you all the best, too, in every arena.

Jump to this post

@mir123 Hi, Thank you for the quick response. Letrozole is most toxic AIs among the three for post menopause women. It reduce the estrogen by up to 96%. Many women had a terrible side effects. The worst that makes me concerned are heart problem. Increase the BP and cholesterol, edemas on extremity and Osteoporosis. My cardiologist put me on Crestor 5mg daily since my cholesterol and triglycerides was elevated before I started AIs. I am very happy for you that you don't have all those critical side effect for 3 1/2 years. My Onco MD only want me to start for 5years. Because those meds will stay in your body for many years after we stopped. As far as recurrence, it all depends the Ca cells. There is nothing we can do to prevent. I like your attitude to take one day at time and enjoy life. It being said" You can choose the life style you want. But how long you can live it is in God hands" We all hope the best for all of us specially for those much younger women. I am 70 in Sep.
Hope we can contact with each other.

REPLY
Please sign in or register to post a reply.