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.

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@windyshores

@callalloo I believe you had DCIS (invasive). And low risk of recurrence. I just want to say that those with invasive ductal or lobular cancer and/or higher Oncotypes, may substantially lower risk of recurrence- by half- by taking aromatase inhibitors.

Did the NEJM article recommend against taking them? Would you mind sharing a link?

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I don't have a link for that article but will post it if I come upon it again. I never did find an explanation for why he cited the predicted benefit of aromatase inhibitors at such a low number. But it really depends on the composition of the statistical universe that he was looking at.

As I noted, I had a low OncotypeDX score so already had, again if the OncotypeDX is a valid and powerful model, a single digit risk of recurrence anyway. That's why being well informed about exactly what one is dealing with is so important because the decisions sometimes need to be made on essentially very short notice. But at least with aromatase inhibitors one can at least try them. I contrast that with chemo and radiation decisions which can have permanent consequences and sometimes have to be made before one understands really what they entail. I continue to hope that everyone dealing with the wily cancer foe gets at least second opinions every step of the way.

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@callalloo

It's been eighteen months since I had a lumpectomy and declined aromatase inhibitors and I'm comfortable with that decision. If there were better, less toxic drugs for osteoporosis, which is possibly looming as I have osteopenia, I might have taken the AI despite nasty side effects.

But I looked at the effects of lack of estrogen on bones and cardio system, and was concerned about them. It helped that I had a low OncotypeDX risk of recurrence and other mitigating factors.

I also pondered an article in the New England Journal of Medicine in which an oncologist (the author of the article) declared that women aren't being sufficiently educated about the risks of aromatase inhibitors and stated that "we're giving 49 women these drugs for no good reason than that they might prevent 1 of the 49 suffering a recurrence." He argued that the toxicity of the drugs is being downplayed and patients are not being informed about the actual statistical likelihood of them helping.

It's a very personal decision that each person must make after considering all of the factors that apply. One path is to try them and, absent any debilitating side effects, consider staying on them if the other variables aren't limitating factors. At least one can discontinue them so the decision is not irrevocable (as are radiation and chemo choices).

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@callalloo I believe you had DCIS (invasive). And low risk of recurrence. I just want to say that those with invasive ductal or lobular cancer and/or higher Oncotypes, may substantially lower risk of recurrence- by half- by taking aromatase inhibitors.

Did the NEJM article recommend against taking them? Would you mind sharing a link?

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@marannolson

I am out 2 years out after 2b lumpectomy and 33 radiation treatments. I had the aching for about a year and one half. Aching is gone now except for pain in my feet. Opted to stay on the arimadex. My Dr. put me on gabapentin for night time hot flashes. It has helped and I am sleeping better for the first time in 15 years. Still have them during the day but I can deal with that.

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It caught my eye that you had pain in your feet. Four months after I started anastrozole, I had severe pain in my feet which was initially diagnosed as plantar fasciitis but became more severe and now is diagnosed as tarpal tunnel syndrome which is the same type of inflammation but in the tendons of the feet. Are you still having foot pain? What did your onc say about it? Have you gone to a foot doctor yet?

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It's been eighteen months since I had a lumpectomy and declined aromatase inhibitors and I'm comfortable with that decision. If there were better, less toxic drugs for osteoporosis, which is possibly looming as I have osteopenia, I might have taken the AI despite nasty side effects.

But I looked at the effects of lack of estrogen on bones and cardio system, and was concerned about them. It helped that I had a low OncotypeDX risk of recurrence and other mitigating factors.

I also pondered an article in the New England Journal of Medicine in which an oncologist (the author of the article) declared that women aren't being sufficiently educated about the risks of aromatase inhibitors and stated that "we're giving 49 women these drugs for no good reason than that they might prevent 1 of the 49 suffering a recurrence." He argued that the toxicity of the drugs is being downplayed and patients are not being informed about the actual statistical likelihood of them helping.

It's a very personal decision that each person must make after considering all of the factors that apply. One path is to try them and, absent any debilitating side effects, consider staying on them if the other variables aren't limitating factors. At least one can discontinue them so the decision is not irrevocable (as are radiation and chemo choices).

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Hi jjoyce1:

Sorry, I had to re-read your initial postings. I am not a medical dr. or have any medical background
You said that you are having daily arrhythmias since the titanium insert, which is your breast surgery.
I do not know if you had arrhythmias before your breast surgery or if they were intermittent ( Only for less than 7 days and then gone )or constantly.Or if they were constant but not noticeable to you.

1) Let your doctors know, Oncology and Primary, Cardiologist if you have one.
They need to address this.

2) You mentioned you have had this since the surgery.

Breast cancer surgery is stress for BC patients. It is a trauma experience.
Stress causes arrhythmias.
I was in a lot of stress from the beginning of this journey.
If I knew what I know now, I would have gotten counseling, meds, and ant-stress meds from the beginning and practiced breathing stress relief exercises and some form of yoga or other exercises and joined in person and online groups.

3) You are debating 5 days or 3 weeks of radiation. I got through 21 days and the aloe cream really helped and I just had a slight sunburn. Every person is different. I do have very fair skin.
You need to discuss this with the Radiation Oncologist and also have the doctor who deals with your mast cell difficulties in on this to make a plan of action and have Radiation Oncologist keep adaily track of you during radiation therapy. and have a couple of different plans or avenues to use and switch if necessary. They need to work as a team on this and share.
4) Ask the Radiation Oncologist if there is such a thing as starting the radiation plan too late.

Ask me more if I have not covered all your concerns.

I finished radiation therapy March 1st and will be 75 soon.

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@anjalima

Why would one have a titanium insert into breast?

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They use titanium to mark the margins of where the breast tumor was removed to give margin locations for breast radiation therapy.

Report your symptoms to
one of your radiation doctors plus your Internist and cardiologist also if you have one.

Did you have daily arrhythmias during radiation therapy such as during the procedure or directly after? They should be told this.

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@timely

Please explain how the titanium causes daily arrhythmia.

I am puzzled about that and have not heard it anyplace.

Did you have arrhythmias before the titanium inserts but not daily?

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Why would one have a titanium insert into breast?

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@bjjoyce1

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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Please explain how the titanium causes daily arrhythmia.

I am puzzled about that and have not heard it anyplace.

Did you have arrhythmias before the titanium inserts but not daily?

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@bjjoyce1

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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Thanks for your reply. I wish the best for you. Good luck.

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@bjjoyce1

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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Good luck. Thanks for your reply.

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