1. < Breast Cancer

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

Posted by lj22 @lj22, Mar 30 11:08am

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.

vegada | @vegada | Apr 23 2:32pm
In reply to @peggydobbs "To vegada: see my answer above. PeggyDobbs" + (show)
@peggydobbs

To vegada: see my answer above. PeggyDobbs

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I had my cancer in 2020 so that is likely the answer as to why I wasn't offered it. I was originally offered chemo but I insisted on getting the Mammaprint test as well in addition to Oncotype and my mammaprint was low risk. Given my stage, size, grade and mammaprint results, 8 doctors then said no chemo and reversed their recommendation. My Oncotype was a 29. Then I also did the RSCLIN model a year or so later and it showed very low risk as well. So I will never know if I made the right decision about not having chemo but I can say the Oncotype was the outlier which is why I paid for the Mammaprint test to see if that genomic test was more in line with my clinical tumor characteristics.

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catlover2020 | @catlover2020 | Apr 23 10:05pm
In reply to @sealskin "Hi! Same! Ah the gold standard treatment doled out to all of us with a big..." + (show)
@sealskin

Hi! Same! Ah the gold standard treatment doled out to all of us with a big dose of fear. I had no support. I did radiation which has been destructive to a tear duct that had to be reconstructed. I had chose not to take Anastrozole but was encouraged by an online survivor so I started Anastrozole 6 months from lumpectomy Sept. 2022. I took it for 1.5 years and quit because of many side effects that destroyed all quality of life-it was poison! And I noticed last March 2024 1/2 my beautiful hair was gone. And today, a year later my hair has thinned at a fast rate the last 4 months and I will be bald in 4 months if it doesn’t stop thinning. My hair has just stopped growing- what’s left is still silky and beautiful. Quality of life and my cognitive abilities and sleep returned after about 4 months of stopping the AI. The bone and muscle pain, inability to sleep were extreme. I was letting fear rule and finally chose quality of life. If cancer returns I’ll deal with it then. I have enough on my plate as it is. Good luck!

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I agree with you.
Castor oil makes eyebrow grow, why not hair. In glass or safe plastic. Google Barbara O'Neil and Castor oil. Amazing this Castor oil is.
Best to you

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bolesee | @bolesee | Apr 29 8:22pm

Three years since lumpectomy and 5 accelerated radiation sessions. Not taking any anti estrogen drugs, doctor supports this due to decades of horrible menopause issues which would return/worsen on Rx. Grade 1 tumor, tiny, no duct or lymph involvement. Eat whole food plant based diet, no oil, salt or sugar. No alcohol or smoking. Follow dr. Michael greger on nutrition facts.org for soy and flaxseed protocols.

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d619141 | @d619141 | Apr 30 8:31am

Stage 1 Class 3 in 1998.
I don’t use hormones, but my cancer was double negative.

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sealskin | @sealskin | Apr 30 4:24pm

Same as you re: cancer diagnosis-2022 20 radiations that destroyed a tear duct that was reconstructed a year later. Began Anastrozole 5 months after lumpectomy April 5, 22 and took for 1.5 years. My friend was also taking anastrozole and we both suffered memory dysfunction, impossible to sleep, relentless hot flashes, severe muscle and joint pain, heart damage, high blood pressure from suffering effects and no sleep. High cholesterol, and loss of 1/3 of my hair which has accelerated during the last year having stopped the toxic anastrozole.
I had no life or brain. All symptoms cleared after 5 months stopping except hair stopped growing and soon to be bald. I am crushed.
Good luck. I don’t trust their gold standard and doctors agreeing to push AIs on women with breast cancer for five years. And then they will play on your fear and try to coerce you to pay for the drug for another ten years!
I had a small lump and no lymph involved but Dr took it anyway. She threatened me when I stopped taking Anastrozole, Dr Christine Lee said, “you’d best take it your body is full of cancer.” Dr Lee declared, “I’m not your doctor anymore.” I have PTSD from Dr Lee’s abuse.
Good luck.
Jan

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bluesun12 | @bluesun12 | Apr 30 11:43pm
In reply to @brightside21 "Ive stopped too. I'm having every test done to check more frequently for any reccurrance. The..." + (show)
@brightside21

Ive stopped too.
I'm having every test done to check more frequently for any reccurrance.
The predict tool is not very helpful & makes a decision difficult to make when there's NO info on recurrances. All we are told is it will be much higher that the predict death rates.
It felt like a step in to the darkness as all I wanted to know was WHAT IS MY % RISK OF RECURRANCE? no one could answer me.
I've made my decision on my quality of life which is definately better OFF Als/ Amotase inhibitors.
I can only eat & sleep well & keep active & avoid alcohol (special occasions may be ) to support my decision & pray 🙏
I did get the support from 2 oncologists as I asked for a 2nd opinion before deciding & both agreed the ALs were limiting my life quality & I would improve both mentally & physically off them.
So I stopped & I am happier, healthier & more active so it's been a good decision.
Good luck making yours.

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Hi Brightside,
Are you able to share more of your BC Stage/Age of occurrence and if you had radiation/lumpectomy? I've had a successful lumpectomy, clear margins, negative lymph nodes, 5 day partial breast targeted radiation therapy, I'm in perimenopause, and Tamoxifin as all the AI options seem like the side effects are really bad and may cause other major health issues. I don't think the USA offers a lower dose of Tamoxifen....
Thank you for all the above shares.

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