1. < Breast Cancer

Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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

bjjoyce1 | @bjjoyce1 | Mar 27, 2023
In reply to @tenayalake86 "I had a lumpectomy last June. I had a grade one DCIS which was 1.5 cm...." + (show)
@tenayalake86

I had a lumpectomy last June. I had a grade one DCIS which was 1.5 cm. with an oncotype of 5. I did not have radiation due to my age [74], but instead chose to take AI. Last month I had to stop the anastrozole, due to a lot of sudden joint pain and other very unpleasant side effects. My oncologist was fine with my not taking it anymore. He will see me every 4 months and I will have blood tests prior to each appointment.

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I am 76 and was advised to take radiation bec of my extreme allergies . I might not be able to take the pill, and if unable to take the pill I could not take radiation due to elapsed time. I am waiting on the onco test results. I was a 5% on the ki test, and hoping the results will be that or lower. I was a Stage 1a, but a grade 2 with 3 markers. 100% ER and 95%PR with HER2 2+equivcol neg. Size 1.3 cm . I was reading some new findings where they are able to break HER2 down further now. I'm so glad you have a good Dr and I pray I have one. I am trying to decide on 5 days or 3 weeks of radiation. My friends are afraid of me burning. I am fighting mast cell and go angioedema and /or anaphylaxis . Some med's make me get thin skin and bleed, and I'm so unsettled right now. I have also started having daily arrhythmia since they placed the titanium in my breast. Your post gave me hope. Take Care and keep us informed.

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3 replies
elliej | @elliej | Mar 26, 2023

I had treatment first of November. No reaction other than a bit of pink skin.
😘

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Tenaya_Lake | @tenayalake86 | Mar 26, 2023

I had a lumpectomy last June. I had a grade one DCIS which was 1.5 cm. with an oncotype of 5. I did not have radiation due to my age [74], but instead chose to take AI. Last month I had to stop the anastrozole, due to a lot of sudden joint pain and other very unpleasant side effects. My oncologist was fine with my not taking it anymore. He will see me every 4 months and I will have blood tests prior to each appointment.

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1 reply
anjalima | @anjalima | Mar 13, 2023
In reply to @debbie2721 "Is this a special test you asked your doctor to do? I appreciate the reply." + (show)
@debbie2721

Is this a special test you asked your doctor to do? I appreciate the reply.

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My GP suggested I talk to a cardiologist as I did not want to go on a statin. Cardiologist recommended the calcium score as a prognostic indicator… had it been high he would have prescribed a statin.

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anjalima | @anjalima | Mar 13, 2023
In reply to @timely "Hi anjalima: You are doing so well. May I ask your age and whether you had..." + (show)
@timely

Hi anjalima:

You are doing so well. May I ask your age and whether you had any cardiac problems to start with? Both may have effects on others in ability to do all the exercise you are able to do.

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I’m 72 and I have not had cardiac problems but it’s in my family genetics. I have been active my whole adult life.

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windyshores | @windyshores | Mar 13, 2023
In reply to @beet8881 "Thanks. I have not heard of BCI. Sounds like a good idea. I have an appointment..." + (show)
@beet8881

Thanks. I have not heard of BCI. Sounds like a good idea. I have an appointment with my (new) 7th Oncologist in April and will ask.

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@beet8881 I might suggest printing out the paperwork and bringing it with you to the doc 🙂 Maybe the BCI is done more these days (it is in the NCCN guidelines I believe) but it might expedite things to do that legwork yourself. They also have patient assistance.
https://www.breastcancerindex.com/order-test?gclid=ceade140449316a26702854fc4e3dd13&gclsrc=3p.ds&msclkid=ceade140449316a26702854fc4e3dd13&utm_source=bing&utm_medium=cpc&utm_campaign=Biotheranostics_BCI_HCP&utm_term=Breast%20Cancer%20Index&utm_content=hcp_breast%20cancer

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debbie2721 | @debbie2721 | Mar 13, 2023
In reply to @anjalima "Calcium score is a prognostic indicator of arterial health ( current level of plaque build up)...." + (show)
@anjalima

Calcium score is a prognostic indicator of arterial health ( current level of plaque build up). It’s a low power CT. One could have an elevated cholesterol but not necessarily have arterial plaque build up … in my case it was zero so doc not concerned about my cholesterol level.
I do pay attention to nutrition and cholesterol .

Hope this helps!

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Is this a special test you asked your doctor to do? I appreciate the reply.

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1 reply
timely | @timely | Mar 13, 2023
In reply to @anjalima "I had two right breast tumors; 99% ER +, 98%PR+, HER2-, stage 2 IDC. Had unilateral..." + (show)
@anjalima

I had two right breast tumors; 99% ER +, 98%PR+, HER2-, stage 2 IDC. Had unilateral mastectomy , no chemo recommended as a very favorable ONCOTYPE, and opted out of radiation ( which seemed scary to me) . Also breast surgeons did not see big value in my case. Doing annual MRI and Mammo at 6 months intervals. Both negative one year out from first (mastectomy ) surgery.

On AI for 11 months, mild joint discomfort worked out with walking, stretching, yoga and resistance ( for bones). Very effective and helpful… don’t even need Tylenol… but I worried about the unseen(felt) side effects.

Mitigation is my game!

BONE HEALTH: D3, K2, multi, curcumin 95, C, and absorbable food based calcium ( for bones) niacin ( for cholesterol). Try to hit 1000 grams of calcium from food plus from 200 multi-Vit. Biotin for some hair thinning.

Did DEXA last week and essentially no change from baseline 3 years ago and pre AI last April. One hip improved .1, one hip decreased .1, L4 lost .1 ( all statistically insignificant). I do consult with endocrinologist as part of mitigation team.

HEART HEALTH :Cholesterol slightly elevated but so was HDL so good ratio remained the same .
Red meat 1-2x month ( maybe), and almost ZERO processed food. Sodium is a bone killer.

Had a calcium score done to make sure plaque not building up. Result :ZERO! Shocked and relieved. ( I thank K2 for this )

Bottom Line: NOT everyone has a significantly difficult reaction ( response) to AI. If it may be beneficial why not try… it is a daily oral pill which has a 50 hour half life that can be stopped at any moment.

I feel safer on this med; I envision it as a daily protection against breast cancer.

I realize that my experience with side effects are mild and tolerable and that’s not the case for some, but it may be worth trying.

Blessings on the path. 🌸

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Hi anjalima:

You are doing so well. May I ask your age and whether you had any cardiac problems to start with? Both may have effects on others in ability to do all the exercise you are able to do.

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1 reply
beet8881 | @beet8881 | Mar 13, 2023
In reply to @windyshores "@beet8881 have you considered the Breast Cancer Index test? It uses your post surgical specimens to..." + (show)
@windyshores

@beet8881 have you considered the Breast Cancer Index test? It uses your post surgical specimens to test your risk of recurrence and whether there is benefit to extended therapy with aromatase inhibitors. The test is done after 5 years of meds. Mine said high risk but not further benefit so I stopped letrozole.

My doc didn't know about it even though it is in the NCCN guidelines. I called the BCI company and got the paperwork and took it to my doc.

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Thanks. I have not heard of BCI. Sounds like a good idea. I have an appointment with my (new) 7th Oncologist in April and will ask.

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1 reply
anjalima | @anjalima | Mar 13, 2023
In reply to @timely "Cholesterol goes up with Leterozole as does triglycerides." + (show)
@timely

Cholesterol goes up with Leterozole as does triglycerides.

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My triglycerides did go up with Anastrozole. Working on this now.

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