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

I appreciate the words of support, and I am happy that so many of you have been able to take them without any severe effects. I've been on anastrozole for a year now. The side effects weren't bad at first, mostly just really bad hot flashes, but they don't bother me anymore. I have hereditary high cholesterol though, and had osteopenia at my initial DEXA scan. Haven't had intercourse with my husband since my diagnosis (too painful). I have memory loss and confusion. The pain and stiffness in my knees is pretty bad. I'm 49, but I feel like I've aged 20-30 years in the past 12 months. I have my appointment with my oncologist in a few hours though, so I will voice my concerns to him.

Ditto on these books.

@songsparrow maybe stop reading about the effects of estrogen 🙂 For many of us, it wasn't that bad. I felt safe on the meds and was sorry to stop. You may do fine. It's worth a try.

I’m so sorry to hear. The book “Radical Remission” and “metabolic approach to cancer” make me see hope. Recommend you read books like these to provide hope and encourage us to make changes to improve our health. Lots of hugs to you and hope you feel better soon both physically and mind.

I'm so sorry you have to go through this. My aunt was diagnosed in her 30s with triple negative, which she bravely fought for 15 years. Thinking about her and reading stories like yours makes me feel guilty about my own complaints, which seem trivial in comparison.

I have just been really angry this entire week. I'm trying not to be, but I can't help it. And every time I read a study on deleterious effects of estrogen deprivation I get even more angry or cry or both. I feel like a statistic and not a person. I'm trying really hard to be calm before my oncologist appointment tomorrow. He's a nice person, and he doesn't deserve my outrage.

I don't remember hearing about any of these tests. I suspect that was because I had no choice in any of the treatments I've had -- by that I mean things were so advanced I had to throw everything at it that I could. My blood pressure is creeping up on AI -- but still, I will continue to take them, or anything else to hold this mess at bay, and keep one foot in the door at a cancer research hospital, hoping I can run the table by the time the AI runs its course for the accepted standard of care. I have been so fortunate thus far.

That is good news for you!
https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.15_suppl.e12043
"Conclusions: This retrospective analysis suggests that 97% of patients with T1b, grade 1, ER/PR positive, HER-2 negative breast cancers had Oncotype scores of less than 25. Hence Oncotype testing may be safely omitted for this group. Grade along with Ki 67 can identify a subset of T1bN0 ER/PR positive and Her 2 negative patients who do not need Oncotype testing."

My tumor met all of these criteria, so it makes sense that he didn’t do the oncotype test. It was 7mm, grade 1, 98% ER+, HER2-. I didn’t know what an oncotype even was, but I have seen so many others reference it when they talked about their cancer. Thank you for explaining!

@songsparrow you can still have an Oncotype (or Mammaprint). After 5 years of meds you can have the Breast Cancer Index and/or Prosigna Assay. I had three tests done with my surgical pathology specimens. They are still available to you.

I read that cancers that are less than 1 cm, grade 1, and highly ER positive, HER2-, may not need an Oncotype. The decision on chemo is clearer and the risk of recurrence is probably low. If you meet those criteria I can try to find it.

Otherwise I wonder why your doc did not do one.

@callalloo As I wrote on another thread, I think these decisons depend on a lot of factors, including the severity and genomic make up of our cancers.

@frogjumper I was 63 when I was diagnosed and did letrozole for 5 years. I wanted to do more but a test told me no further benefit. I felt safe on them. I had very few side effects. Most of my friends with cancer also tolerated them well. Just another point of view.

I had a lumpectomy in October, 2021 for a small mass: ER+,HER2-, approx. 8mm including clean margins and negative sentinel lobe biopsy. I had the OncotypeDX test done and that showed a 3% risk of recurrence if I took aromatase inhibitors, which calculates to a little over 5% if I did not take aromatase inhibitors. No chemo was recommended because of the OncotypeDX result which basically which basically evaluates the risk/reward of chemo and, because of low predicted odds of recurrence, suggested chemo not be recommended. I tried anastrazole and didn't like the side effects so, with the agreement of two oncologists, reassured by the OncotypeDX result and the negative sentinel lymph node biopsies, I chose not to take any anti-hormone therapy.

Were I in my 30s, my choice would have been very different because the same cancer I had, in a younger woman, could spread like wildfire. So there are a lot of variables to consider with these things and no one perfect answer. In my opinion, the two most valuable things I agreed to were a sentinel lymph node biopsy and the OncotypeDX. The clean sentinel node helped reassure both oncologists and me that we were able to catch this cancer early. And the OncotypeDX put me in a statistical universe of women who had the same type of cancer, caught early, who later evidenced a very low rate of recurrence. I hope that other people dealing with this seek out any data points that might be helpful in identifying protocols and drugs that are the most likely to help them. I had rejected the suggestion of having a sentinel lymph node biopsy. And then, an hour or so before the lumpectomy, I told the surgeon that I changed my mind and went ahead with it. I am very glad that I did!