CommunitiesHR+ HER2-What is the recurrence risk for women on Aromatase Inhibitors?

What is the recurrence risk for women on Aromatase Inhibitors?

RD

Community Member

2 years ago

Does anyone know what the chance of recurrence is for those in AI’s? I know it reduces the chance of recurrence, but I still hear of women having recurrence while on AI’s or shortly after completing their regimen. Quite honestly All of the side effects scare me and sound worse than the chemo I’ve had.

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34 comments
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accepted answer

Accepted Answer

Aromatase inhibitors are indeed effective at reducing recurrence risk in HR+ breast cancer, though the exact percentages can vary based on individual factors like stage and other treatments received. It's completely understandable to feel concerned about both recurrence and side effects - many people in this community share these same worries and have found helpful ways to manage AI side effects while staying on treatment. Consider discussing your specific concerns with your oncologist, as they can provide personalized risk information and potentially suggest strategies to make the medication more tolerable.

3+ patients found this helpful

ME

Community Member

6 months ago

I agree. I haven't started mine yet. I really don't want to take them. They sound horrible 😕

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CS

Community Member

6 months ago

I hope you think about at least trying tge AIs. You can always stop them....

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GD

Community Member

6 months ago

I know studies show there is a benefit but not a guarantee. No 2 cancers are a like, and no two people are a like. My suggestion is to give it a try and see how your body handles it.

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LA

Community Member

6 months ago

The AI's make you half as likely to get a recurrence. That's not perfect but better than anything else so far.

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RD

Community Member

6 months ago

Well I started letrozole in November and so far only minor aches and pains. I am scared of the bone loss as I already have osteoporosis, so I’m doing a round of reklast.

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DA

Community Member

6 months ago

Give it to God!  All that you just said is completely true. But no reason to be scared check out how much money it cost to be on the pills How much money they make. Find yourself a functional doctor. They heal your whole body. You already did the chemo I wouldn’t do the girls change your diet. Tweak the rest of your stuff stay off sugar you can have coconut sugar and live your life. I had no chemo or radiation and I’m going to a Integrative functional oncologist

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ME

Community Member

6 months ago

So Denis, A., I was responding to another one of your messages on this site , something froze on this site/ my phone and now I can't find your other message ( you went into detail and it was interesting). 🤨🤔 Anyway, how did you go about finding a functional/ integrative oncologist? I think I need that.

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KH

Community Member

6 months ago

I have been on letrozole since my cancer was diagnosed in Sept of last year. I have lots of joint pain but I’m sticking with the science as much as possible. Your doctors are trying to help you. Our country needs national health insurance to get us the medications we need. I’m now past mastectomy and getting radiation. 8 hr arthritis pills work wonders. I will have the infusions for bones every 6 months. I am also on Verzenio pills, not chemotherapy. Time will tell and yes I will try to eat well and exercise too. Always good advice!

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KW

Community Member

6 months ago

I was on Anastrazole for 7 years. Finished taking it in August. Last month was diagnosed with a recurrence. Going for CT and full body bone scan next week. Trying to stay positive.

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ME

Community Member

6 months ago

Karen, so sorry to hear that. I will be thinking and praying for you .

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LC

Community Member

6 months ago

At least give it a try. Yes there are side effects but not everyone experiences them to the same degree. You can always stop taking it.

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KE

Community Member

6 months ago

Rebecca I have osteoporosis too. I just finished chemotherapy and am deciding on which medication AI or Tamoxifen. I have not heard of reklast- does it help are there side affects

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KH

Community Member

6 months ago

I am getting an infusion of Zometa every 6 months to offset the Letrozole AI effect on bones. I don’t know Reklast.

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CS

Community Member

6 months ago

Kay how is the Zometa and side effects? Might be in my future soon....thx.

EA

Community Member

6 months ago

I just completed my 3yr course of IV Zometa every 6 months. Initial infusion #1 I felt some chills, tired and bit like a cold was coming on. The remainder of the every 6 month infusion experienced being a bit tired, otherwise fine. I took Anastrozole for a little over one year, stopped due to bone pain, swelling of joints, tried Letrozole that was worse: hair thinning, nails breaking, joint pain & swelling. Did not resume any further aromatase inhibitors.

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CS

Community Member

6 months ago

Thx you Elizabeth, this is so helpful.

CF

Community Member

6 months ago

Kay H how are you doing on the Verzenio? I am to start taking that soon. I will be starting on 100mg . Also I’ll be on Letrozole.

KH

Community Member

6 months ago

Hi! Sorry to say, I parted company with Verzenio a couple of months ago. I started having horrible stomach pain that sent me to ER one night. Doc has replaced it with Ibrance, a cousin of Verzenio. After my first month, all is well. Good luck! Yes, we are all different in our responses to these things. Sigh.

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KH

Community Member

6 months ago

Cherie, I have been given just one infusion of Zometa so far. I had no noticeable side effects. 😉

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CS

Community Member

6 months ago

Thx you Kay.My fingers 🤞 for the same as you... :)

DB

Community Member

6 months ago

I was diagnosed hr+ HER2- in May 2023. Took letrozol for 2 months. I am bipolar and it interfered with my moods in a really bad way, quick to anger, no filter on what came out of my mouth. Woke up every day in tears. I was miserable. So I quit the AI. April 2024 I saw a large lump at the base of my neck. Now I have metastatic BC that has spread to my lungs, neck, spine and rt shoulder. Started on exemestane and kisqali to pause the progression. The AI is important and there may be one that has fewer side effects. I wish I had tried other AIs.

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CS

Community Member

6 months ago

Prayers and good thoughts for you Debra. Don't be hard on yourself. Breast Cancer is sneaky and can recur even with all the medical interventions out there. Quality of life is so important and you made the best decision you could at the time. Focus forward and hang tough..... ✨️

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ZT

Community Member

6 months ago

I was on Anastrozole for 6 years my cancer mutated and came back. My oncologist never talked to me about ESR1 mutations. So it was a big surprise for me.

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LC

Community Member

6 months ago

There are positives and negatives. It all comes down you making a comfortable choice. Yes some people experience very nasty side effects, but some don’t. My personal first 3 months were horrible, but after that, many of the side effects lessened to a point where I could live with them. It is wonderful that we can all share our experiences, but keep in mind, everyone has their own journey.

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JJ

Community Member

6 months ago

Hi, I have been on Arimidex for 3 months and the only side affects I have are the hot flashes and sleep issues. There is medication available for the hot flashes, but mine are manageable without it. I will be talking to my oncologist about my sleep issue. I'm still working so the sleep is my biggest complaint.

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