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Aromatase Inhibitors: Did you decide to go on them or not?
Breast Cancer | Last Active: May 12, 2023 | Replies (1190)Comment receiving replies
Agree, and I would add that my uneducated guess is that the side affects of AI's, Tamoxifen would mimic menopause and mine was absolute hell. If you had a rough time with that like me then this therapy would be almost just like it or maybe worse. I chose to turn them down no matter what. I also turned down the Oncotype test as well, simply because I knew I would not take them, making the test a moot point. Had they found cancer in my lymph node(s) I knew I was a 100% I wanted chemo. That was my plan and I was sticking with it. Thankfully they did not and my pathology turned out great. Based on the algorithms my benefit of AI"s was in the 0.4 to 1.4 range over 10 years. My belief is that a lot of woman take them because they are told to and I don't think they are doing themselves any favors by not finding out exactly benefit vs toxicities and quality of life.
Replies to "Agree, and I would add that my uneducated guess is that the side affects of AI's,..."
@frogjumper I understand your fears of a repeat menopause experience! I took letrozole for 5 years and that was not what happened for me. I had some hot flashes at first, but I pretty much still had them anyway (and still do at 72). I am sensitive to meds and had to take brand name, which solved the problem of fillers.
I just want to mention some misunderstandings about the Oncotype, if only for others reading posts on this forum. The Oncotype is used now not only in addition to pathology but, I guess you could say, instead of. By that I mean, a grade one cancer may have a high Oncotype, and 30% of grade 3's (including mine) have low Oncotypes (and don't benefit from chemo). Some patients with 1-3 positive lymph nodes have an Oncotype that says no chemo.
In other words, the genomic testing of the Oncotype (and other tests like Mammaprint) give information that you cannot get any other way.
I do think that if your ER and PR were highly positive, and HER2- (and ki67% low) you could speculate that you are at low risk (your doc can confirm_, but an Oncotype can confirm that with more assurance.
(We can have one at any time, using surgical pathology specimens.)
I do not just do what docs tell me to do. My case was complicated with a lot of contradictory tests, and I already had severe osteoporosis- not osteopenia. I got 4 opinions. I trust the stats from Oncotype that my risk was cut in half with meds and nothing would stop me from taking them. That was my choice and sure there were side effects (some that eased) and probably health effects, but I wanted to do anything I could to avoid a recurrence and was so grateful to take AI's and not have chemo.
I have done bone meds for 18 months (after finishing letrozole) and my bone density is now better than before the aromatase inhibitor, so that has been addressed.
At the 5 year mark, I did a Breast Cancer Index, another genomic test that tells whether extending hormonal therapy is of benefit, and what our risk is. I got a "no" to more meds. If I had gotten a "yes' I would have done two more years, not five.
I am glad your risk is considered low and wish you and everyone reading this the best in these difficult decisions.
Well, I guess I may disagree with the permanence of Chemo and Radiation vs AI. My point being, I had radiation with no side effects. AI caused a multitude of side effects to the systemic maintenance of normal functions. Osteoporosis is no little thing, stroke is no little thing. Daily muscle pain is no little thing. Hair loss is no little thing. Please ladies, consider what is Best for you individually and advocate for yourself. There are No one size solutions to treatment. ❤️
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You are a very helpful friend of this platform. I thank you! Sharing a recent possible alternative that might prove valuable. I am hopeful that the medical experts will eventually find it appropriate to share these with us who are contemplating the value of side effects. ❤️
https://www.nature.com/articles/s41416-019-0435-4