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.

anjalima | @anjalima | Nov 6, 2022
In reply to @windyshores "I cannot common in DCIS invasive, so my comments are for IDC itself: I don't personally..." + (show)
@windyshores

I cannot common in DCIS invasive, so my comments are for IDC itself:

I don't personally know anyone who has cognition or memory issues on an AI, and I don't seem them listed as side effects.

I had severe osteoporosis, as I have written previously, and did 5 years on letrozole. Most people also take a biphosphonate during the AI treatment but I was unable to. I am now on Tymlos.

I would rather deal with some bone loss than cancer. The Breast Cancer Index, at the time I had that test, considered any risk over 4.7% as "high." It is up to your doc and you whether 3% versus 7% is significant.

Another factor might be your ER score. Since your Oncotype was low, I assume your ER% was high.

Jump to this post

Is there a strong correlation between high ER% and lower ONCOTYPE? I’ve not heard that before… learn something everyday… such nuance and complexity.

So sorry about your Mom. It’s a brutal experience that I also experienced. Hugs.

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1 reply
windyshores | @windyshores | Nov 7, 2022
In reply to @anjalima "Is there a strong correlation between high ER% and lower ONCOTYPE? I’ve not heard that before…..." + (show)
@anjalima

Is there a strong correlation between high ER% and lower ONCOTYPE? I’ve not heard that before… learn something everyday… such nuance and complexity.

So sorry about your Mom. It’s a brutal experience that I also experienced. Hugs.

Jump to this post

@anjalima that is an assumption on my part (that high ER score would mean lower Oncotype), since the avoidance of chemo would seem to depend on the effectiveness of hormonal treatment. I believe the company told me this as well, but it was a long time ago.

Also, my cancer pathology was not good at all (grade 3, high ki67%, LVI) but my ER was 95% and my Oncotype was low. I reasoned that the only reason my Oncotype was low and recommended against chemo, was my high ER score. But ask your doc!

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1 reply
Tenaya_Lake | @tenayalake86 | Nov 7, 2022
In reply to @windyshores "I cannot common in DCIS invasive, so my comments are for IDC itself: I don't personally..." + (show)
@windyshores

I cannot common in DCIS invasive, so my comments are for IDC itself:

I don't personally know anyone who has cognition or memory issues on an AI, and I don't seem them listed as side effects.

I had severe osteoporosis, as I have written previously, and did 5 years on letrozole. Most people also take a biphosphonate during the AI treatment but I was unable to. I am now on Tymlos.

I would rather deal with some bone loss than cancer. The Breast Cancer Index, at the time I had that test, considered any risk over 4.7% as "high." It is up to your doc and you whether 3% versus 7% is significant.

Another factor might be your ER score. Since your Oncotype was low, I assume your ER% was high.

Jump to this post

I started to write back to you, and somehow must have erased the reply in the process of finding online references. I believe there are some therapies for bone loss [Fosamax?} but none for cognitive decline. I will say that there are various 'camps' online...some saying no effect on cognitive ability and some saying the opposite, especially from 12 to 18 months after starting AI.. I've tried to concentrate on .edu and other well-known, reliable sources.
I don't know how cognitive decline is measured, and I don't know if I'd notice it myself, either in others or myself. Some studies have put forth the idea that the stress of the diagnosis may contribute. There's a catch-22!. I'm still up in the air and I need to discuss this further with my dr. It's not my purpose to persuade or dissuade you; I'm just interested in hearing various points of view. Thanks for sharing yours.

Here's another reference to memory loss from https://acsjournals.onlinelibrary.wiley.com/doi/pdfdirect/10.1002/cncr.29393:

"...Twelve to 18 Months After Anastrozole Initiation
However, from 12 to 18 months, the anastrozole-alone
group again exhibited a decline in working memory and a
trend toward a deterioration in concentration...."

REPLY
2 replies
anjalima | @anjalima | Nov 7, 2022
In reply to @windyshores "@anjalima that is an assumption on my part (that high ER score would mean lower Oncotype),..." + (show)
@windyshores

@anjalima that is an assumption on my part (that high ER score would mean lower Oncotype), since the avoidance of chemo would seem to depend on the effectiveness of hormonal treatment. I believe the company told me this as well, but it was a long time ago.

Also, my cancer pathology was not good at all (grade 3, high ki67%, LVI) but my ER was 95% and my Oncotype was low. I reasoned that the only reason my Oncotype was low and recommended against chemo, was my high ER score. But ask your doc!

Jump to this post

Wow! That does sound right. I had 98% and 99% ER positive on each of 2 foci… KI 20 and 22, but low ONCOTYPE. I do take AI … now in month 7 but recommended for 5 years… to be evaluated for 7-10. I’m fortunate that I tolerate this well ( for the side effects that I can observe). I will ask that question however and get back if there is any nuance to the concept. 🌸

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1 reply
windyshores | @windyshores | Nov 8, 2022
In reply to @anjalima "Wow! That does sound right. I had 98% and 99% ER positive on each of 2..." + (show)
@anjalima

Wow! That does sound right. I had 98% and 99% ER positive on each of 2 foci… KI 20 and 22, but low ONCOTYPE. I do take AI … now in month 7 but recommended for 5 years… to be evaluated for 7-10. I’m fortunate that I tolerate this well ( for the side effects that I can observe). I will ask that question however and get back if there is any nuance to the concept. 🌸

Jump to this post

My KI% was also 20, and grade 3. I do believe the company told me that my high ER% could account for the low Oncotype, but at year 5 the Breast Cancer Index said no benefit to further treatment with AI! I had so many contradictory tests over the course of my treatment! We can only do the best we can. Doctors are the best guides (I don't always feel that way, but with breast cancer, once I found the right doc, I trusted....).
Let me know!

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rene1636 | @rene1636 | Nov 8, 2022
In reply to @trixie999 "My concern is how the AI will effect my heart. Letrozole is the prescribed drug but..." + (show)
@trixie999

My concern is how the AI will effect my heart. Letrozole is the prescribed drug but I am waiting to take it until I have a CAC scan next week. Am I the only one worried about cardiac calcification and a potential heart attack? Maybe this is not as great a risk as I have cooked up in my mind? (It would be nice to be wrong about this.) I feel like I have to choose between a BC reoccurrence and a heart attack.

Jump to this post

No, your not the only one. I’m extremely concerned as well since most AI’s list side effects that can damage the heart. My Oncologist looked at me like I was crazy so I took it upon myself to find a cardiologist. I’ve gotten a heart calcium score after some scans for other stuff showed calcium. I’m refusing anything until I get clearance from a cardiologist. I had my appointment last week. He scheduled a chemical stress test & an ultrasound to check the abdominal aorta on 11/28. He said he can’t tell if there is any blockage or arteries that have been blocked until the stress test. After testing we’ll evaluate which meds would be best for my ER/PR+ DCIS depending on the results. I’m passing on radiation after a lumpectomy so I think the AI’s would be beneficial as an added precaution. If your hearts not ok then there’s not much point in treatments that are going to make that worse. Without your heart you’ve got nothing & with my family’s terrible cardiac history I had to be my own advocate………AGAIN! I don’t trust the “here take a pill” & the rest be damned mentality. I also have Osteoporosis so I’m looking into Osteo Strong instead of another pill.

REPLY
1 reply
windyshores | @windyshores | Nov 8, 2022
In reply to @tenayalake86 "I started to write back to you, and somehow must have erased the reply in the..." + (show)
@tenayalake86

I started to write back to you, and somehow must have erased the reply in the process of finding online references. I believe there are some therapies for bone loss [Fosamax?} but none for cognitive decline. I will say that there are various 'camps' online...some saying no effect on cognitive ability and some saying the opposite, especially from 12 to 18 months after starting AI.. I've tried to concentrate on .edu and other well-known, reliable sources.
I don't know how cognitive decline is measured, and I don't know if I'd notice it myself, either in others or myself. Some studies have put forth the idea that the stress of the diagnosis may contribute. There's a catch-22!. I'm still up in the air and I need to discuss this further with my dr. It's not my purpose to persuade or dissuade you; I'm just interested in hearing various points of view. Thanks for sharing yours.

Here's another reference to memory loss from https://acsjournals.onlinelibrary.wiley.com/doi/pdfdirect/10.1002/cncr.29393:

"...Twelve to 18 Months After Anastrozole Initiation
However, from 12 to 18 months, the anastrozole-alone
group again exhibited a decline in working memory and a
trend toward a deterioration in concentration...."

Jump to this post

@kchiavetta86 As always, I urge people to read the entire study. I could pick out a quote that is more reassuring such as:

"Women in both breast cancer groups had poorer executive functioning before and during therapy that did not appear to be influenced by treatment. Multiple mechanisms, including changes in inflammatory cytokines, neurotransmitter dysregulation, stress, and mood, may explain this persistently poorer executive functioning."

Also, while memory and concentration declined in the first 6 months and months 12-18, it actually improved in months 6-12.

In other words, the conclusion in the study is quite complex. I would also add that these meds treat cancer. Frankly, I would choose a "subtle" (the study uses this word) dip in cognition over cancer!

A lot more well-designed studies are needed, including whether these subtle changes rebound after treatment is over. I have to say, I feel fine, after 5 years, but everyone is different.

REPLY
marcia115 | @marcia115 | Nov 9, 2022
In reply to @rene1636 "No, your not the only one. I’m extremely concerned as well since most AI’s list side..." + (show)
@rene1636

No, your not the only one. I’m extremely concerned as well since most AI’s list side effects that can damage the heart. My Oncologist looked at me like I was crazy so I took it upon myself to find a cardiologist. I’ve gotten a heart calcium score after some scans for other stuff showed calcium. I’m refusing anything until I get clearance from a cardiologist. I had my appointment last week. He scheduled a chemical stress test & an ultrasound to check the abdominal aorta on 11/28. He said he can’t tell if there is any blockage or arteries that have been blocked until the stress test. After testing we’ll evaluate which meds would be best for my ER/PR+ DCIS depending on the results. I’m passing on radiation after a lumpectomy so I think the AI’s would be beneficial as an added precaution. If your hearts not ok then there’s not much point in treatments that are going to make that worse. Without your heart you’ve got nothing & with my family’s terrible cardiac history I had to be my own advocate………AGAIN! I don’t trust the “here take a pill” & the rest be damned mentality. I also have Osteoporosis so I’m looking into Osteo Strong instead of another pill.

Jump to this post

I feel the same as you, I have an operation in a few weeks and they want me to
take radiation and the pill. I told them I am 81 and have osteoporosis and this med.
thins out your bones. So if they can't do radiation because I had lung cancer, I will do nothing and hope for the best. if it does come back I will have it out again.

REPLY
1 reply
windyshores | @windyshores | Nov 10, 2022
In reply to @marcia115 "I feel the same as you, I have an operation in a few weeks and they..." + (show)
@marcia115

I feel the same as you, I have an operation in a few weeks and they want me to
take radiation and the pill. I told them I am 81 and have osteoporosis and this med.
thins out your bones. So if they can't do radiation because I had lung cancer, I will do nothing and hope for the best. if it does come back I will have it out again.

Jump to this post

@marcia115 what is your risk with and without the hormonal meds? I had osteoporosis (pretty severe) but still took the aromatase inhibitor for 5 years, I am now on Tymlos to get bone back.

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marcia115 | @marcia115 | Nov 10, 2022

they said a 10% chance it could come back. This one took 9 years to come back, I am 81 and they say
the older you are it grows slow. aromatase the same as anastrozole?
Marcia

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