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

@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.

Thanks for sharing your thoughts. Please know I did not experience any side effects of consequence during my first year on Anastrozole. This second year has resulted in side effects that have left me considering my quality of life as I opted for a hold from taking Anastrozole suggested by my oncologist . I only found this article of interest as I consider what my my options are going forward. The article is something I did not know might be an option going forward. It is under consideration.

@ginip very interesting about improvements in quality of life in the first year or two with 3 month breaks in therapy. I wondered, since my side effects were the worst when I first started, and my bone loss was worse in the first year than the other 4 years, whether intermittent therapy would somehow pose worse effects, particularly on bones. I would love to see this study after 5 years rather than two!

Overall this could be an encouraging option if adopted in practice and the guidelines. Thanks for sharing.

Yes! So much to be considered when trying to decide what to do!

I just wish we could be provided with medical updates for consideration as they happen by our medical caregivers instead of relying on Google for this much needed info in making such a huge decision

@ginip very interesting about improvements in quality of life in the first year or two with 3 month breaks in therapy. I wondered, since my side effects were the worst when I first started, and my bone loss was worse in the first year than the other 4 years, whether intermittent therapy would somehow pose worse effects, particularly on bones. I would love to see this study after 5 years rather than two!

Overall this could be an encouraging option if adopted in practice and the guidelines. Thanks for sharing.

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.

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

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.

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.

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.