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

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I am not taking them and am 73 . I know 2 people who have gone over 15 years without reoccurence that have not taken estrogen blockers. I am wondering if i should take 10mg instead of 20 if i do decide to take them. I have read studies that show that is just as good with less side effects. Havent decided yet.

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I was also prescribed tamoxifen 20mg. I have just completed radiation. I am Stage 1. Tumour was very small. Nothing in lymph nodes or margins. I have done extensive research on this drug. I am not taking it as prescribed. I am taking 5 mg a day. Do your research before taking this very toxic drug. In many parts of Europe studies indicate 5 mg per day or 10 mg every other day produces the same results with far less side affects. I am 71 years old and very active. It is about quality of life for me. I will not accept the aches , pains and more serious side affects that I may have in the remaining years I have left by taking this drug. Please do your research before starting this drug. There is lots of research and studies posted on the internet. Educate yourself before agreeing to take this drug. Wishing you well.

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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
I finished treatment april second twenty twenty four. Had right breast lumpectomy one node removed. I was e r p r positive and her 2 negative stage zero. I did not do hormone therapy. It's still pretty early. Have osteopenia with compression fracture plus fibro. It's still early but hopefully hopefully I made the right decision.

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4 years after refusing hormone therapy at the age of 80 , I am doing fine. I was HER2 positive, stage 2 with 3 lymph nodes involved. I had a lumpectomy, chemo and radiation.

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I notice that there are few (no?) mentions of Oncotype score. Does that mean that those who decide against AIs had low scores (less than 25)? Or, that they weren't tested? Or that a score > 25 wasn't compelling?

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@peggydobbs

I notice that there are few (no?) mentions of Oncotype score. Does that mean that those who decide against AIs had low scores (less than 25)? Or, that they weren't tested? Or that a score > 25 wasn't compelling?

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In my case, low score

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@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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My treatment plan is 20 radiation session with the last 4 boosts. He said that a high percentage of woman can’t tolerate the AI(which I will get one month after radiation) and end up stopping it. That’s why he said the radiation would up my chances for no reoccurrence.

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My understanding is that AIs are to prevent recurrence and metastasis. I’m not so worried about local recurrence as much as metastasis which usually is not detected easily. That said, the decision of taking or not taking AI is a personal decision. Some cancer cells can develop resistance to AI and not everyone can tolerate AIs. Good luck to all of us.

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@myoga

My understanding is that AIs are to prevent recurrence and metastasis. I’m not so worried about local recurrence as much as metastasis which usually is not detected easily. That said, the decision of taking or not taking AI is a personal decision. Some cancer cells can develop resistance to AI and not everyone can tolerate AIs. Good luck to all of us.

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I have read that up to a third of cases the women develop resistance to AIs, and wonder why there is no procedure to identify those women, so would know we could stop the AI...

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