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.

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shelleyc | @shelleyc | Jun 22, 2020

I also question the use of these drugs. I was told 87% survival with 83% with no drugs. I did do radiation and a lumpectomy and had a multitude of side effects with the radiation that only happen rarely, so I have decided against one more thing that would put me dealing with side effects. I have a Chek2 minor gene mutation and a possibility of schongrens or some other autoimmune disease that they cannot figure out. I already have osteopenia, some arthritis and the beginning of cataracts from the RAI131 radiation I took for thyroid cancer 3 years ago. It just seems everyone has had issues taking the medication. I have to keep a steady weight to keep my thyroid meds in line as well. I have two friends who never took it and they are six years and 17 years cancer free. I agree with whoever said it is just a personal decision. If mine comes back it is a mastectomy for me.

REPLY
2 replies
elizm | @elizm | Jun 22, 2020
In reply to @shelleyc "I also question the use of these drugs. I was told 87% survival with 83% with..." + (show)
@shelleyc

I also question the use of these drugs. I was told 87% survival with 83% with no drugs. I did do radiation and a lumpectomy and had a multitude of side effects with the radiation that only happen rarely, so I have decided against one more thing that would put me dealing with side effects. I have a Chek2 minor gene mutation and a possibility of schongrens or some other autoimmune disease that they cannot figure out. I already have osteopenia, some arthritis and the beginning of cataracts from the RAI131 radiation I took for thyroid cancer 3 years ago. It just seems everyone has had issues taking the medication. I have to keep a steady weight to keep my thyroid meds in line as well. I have two friends who never took it and they are six years and 17 years cancer free. I agree with whoever said it is just a personal decision. If mine comes back it is a mastectomy for me.

Jump to this post

@shelleyc
Looking at your statement "If mine comes back, it is a mastectomy for me." That's what I thought with regards to ever having chemo, again. But during a conversation with my oncologist (a few years ago), he said that a mastectomy at that point wouldn't help. You might want to speak to your oncologist about that, too.

REPLY
1 reply
elizm | @elizm | Jun 22, 2020
In reply to @trixie1313 "@katrina123 I don't know if this will help, but this is a calculator that doctor's use..." + (show)
@trixie1313

@katrina123
I don't know if this will help, but this is a calculator that doctor's use to tell you if your chances are high for cancer to return. https://www.cts5-calculator.com/ It's been explained to me that aromatase inhibitors do help your chances. I've tried anastrozole and letrozole but did not do well with them and have been on exemestane now and have few problems with it. Because of the types of cancer I have, will need to be on it for 10 years. I wish you well in your decision.

Jump to this post

@trixie1313
From what I read, there are dozens of calculators. I'm guessing that one would have to ask one's oncologist which s/he uses, yes? In addition, wouldn't such factors as type of breast cancer and its hormone receptor and HER-2 statuses need to be included in determining recurrence risks?

REPLY
1 reply
trixie1313 | @trixie1313 | Jun 22, 2020
In reply to @elizm "@trixie1313 From what I read, there are dozens of calculators. I'm guessing that one would have..." + (show)
@elizm

@trixie1313
From what I read, there are dozens of calculators. I'm guessing that one would have to ask one's oncologist which s/he uses, yes? In addition, wouldn't such factors as type of breast cancer and its hormone receptor and HER-2 statuses need to be included in determining recurrence risks?

Jump to this post

elizm @elizm
It was used by my oncologist. I also input the information from my pathology report as I wanted to verify the information. Because I have both infiltrating ductal carcinoma and neuroendocrine carcinoma, I opted to go ahead with the aromatase inhibitor. This calculator is used for ER/PR positive tumors. Here is an article that may explain further: https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk

REPLY
1 reply
kathyomaha55 | @kathyomaha55 | Jun 22, 2020
In reply to @shelleyc "I also question the use of these drugs. I was told 87% survival with 83% with..." + (show)
@shelleyc

I also question the use of these drugs. I was told 87% survival with 83% with no drugs. I did do radiation and a lumpectomy and had a multitude of side effects with the radiation that only happen rarely, so I have decided against one more thing that would put me dealing with side effects. I have a Chek2 minor gene mutation and a possibility of schongrens or some other autoimmune disease that they cannot figure out. I already have osteopenia, some arthritis and the beginning of cataracts from the RAI131 radiation I took for thyroid cancer 3 years ago. It just seems everyone has had issues taking the medication. I have to keep a steady weight to keep my thyroid meds in line as well. I have two friends who never took it and they are six years and 17 years cancer free. I agree with whoever said it is just a personal decision. If mine comes back it is a mastectomy for me.

Jump to this post

Talk to your oncologist. If it comes back it most likely will come back in the Brain, bones, lung or liver. So a Mastectomy will not help. After I had all these facts - i decided to take an AI. But it is a personal choice. I read like 20% or so of women stop taking it in the first 2 years of treatment from side effects. Because of my age at the time of diagnosis - 62 - I decided taking an AI was my choice. I want to live another 20 years.

REPLY
kathyomaha55 | @kathyomaha55 | Jun 22, 2020
In reply to @elizm "@shelleyc Looking at your statement "If mine comes back, it is a mastectomy for me." That's..." + (show)
@elizm

@shelleyc
Looking at your statement "If mine comes back, it is a mastectomy for me." That's what I thought with regards to ever having chemo, again. But during a conversation with my oncologist (a few years ago), he said that a mastectomy at that point wouldn't help. You might want to speak to your oncologist about that, too.

Jump to this post

Yes - it most likely will not return in the breast. I heard of a woman who said that & refused radiation. It came back in her brain & she died,

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katrina123 | @katrina123 | Jun 22, 2020
In reply to @elizm "@katrina123 Hi, Katrina. Perhaps a good place to start would be you pointing out what it..." + (show)
@elizm

@katrina123
Hi, Katrina. Perhaps a good place to start would be you pointing out what it is exactly that you're reading?

Jump to this post

@elizm
Following is the information that I was talking about.
Posted by elsie37 @elsie37, Sep 13, 2019
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464018/ is the location.
elizm...This is all a new journey for me and I am just trying to find out as much as I can about this treatment.

REPLY
1 reply
katrina123 | @katrina123 | Jun 22, 2020
In reply to @trixie1313 "@katrina123 I don't know if this will help, but this is a calculator that doctor's use..." + (show)
@trixie1313

@katrina123
I don't know if this will help, but this is a calculator that doctor's use to tell you if your chances are high for cancer to return. https://www.cts5-calculator.com/ It's been explained to me that aromatase inhibitors do help your chances. I've tried anastrozole and letrozole but did not do well with them and have been on exemestane now and have few problems with it. Because of the types of cancer I have, will need to be on it for 10 years. I wish you well in your decision.

Jump to this post

@trixie1313
Thank you for the information.

REPLY
elizm | @elizm | Jun 22, 2020
In reply to @trixie1313 "elizm @elizm It was used by my oncologist. I also input the information from my pathology..." + (show)
@trixie1313

elizm @elizm
It was used by my oncologist. I also input the information from my pathology report as I wanted to verify the information. Because I have both infiltrating ductal carcinoma and neuroendocrine carcinoma, I opted to go ahead with the aromatase inhibitor. This calculator is used for ER/PR positive tumors. Here is an article that may explain further: https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk

Jump to this post

@trixie1313 Thanks, Trixie. It seems to be applicable to hormone receptor positive DCIS, but nothing else... is that correct? I'll have to ask my oncologist in July which calculator he is using for HER2+++ IDC, assuming there is one.

REPLY
1 reply
kathyomaha55 | @kathyomaha55 | Jun 22, 2020
In reply to @elizm "@trixie1313 Thanks, Trixie. It seems to be applicable to hormone receptor positive DCIS, but nothing else......" + (show)
@elizm

@trixie1313 Thanks, Trixie. It seems to be applicable to hormone receptor positive DCIS, but nothing else... is that correct? I'll have to ask my oncologist in July which calculator he is using for HER2+++ IDC, assuming there is one.

Jump to this post

I was HER2 neg and HR+ with IDC. I had lumpectomy with radiation, No chemo. Good luck.

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