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

So helpful for me! Many thanks. I had BC surgery end of September. Radiation just last week, 5 days, Mon.-Fri. Feeling good, just tired. Waiting for post Rad consult. Any advise? Thank you for your kindness🌷

Thank you to everyone who has shared their experiences on this thread. I have spent a considerable amount of time reading through it.

I'm currently 49, been on anastrozole (arimidex) for one year. Have my one year appointment with my oncologist on Friday, where I hope to have a discussion about the side effects of the AI. I went through menopause at 45, when I started HRT to help with the symptoms. Two years later (2021) I was diagnosed with IDC, presumably from the HRT but I don't think that can be proven. I don't have an oncotype for my tumor (is that something that I should have?), and my doctor never discussed the recurrence rates, but I didn't ask. I have a 9 year old son with moderate-mild autism, and my main priority is living as long as possible to make sure he is set up for success in life. I did everything my doctor said without question. What I do know is that my OB said that if I had to get cancer, this was a very good diagnosis to get. I was told my tumor was slow growing and non-aggressive. Clear margins and no lymph node involvement. ER/PR+, HER2-, Ki-67 is 8%. Lumpectomy and 25 radiation treatments, no chemo. My mammogram in September was good, and I have another scheduled for this September. My genetic testing showed no BCRA positive genes.

I have been taking anastrozole and dealing with the side effects mainly because I want to live as long as possible for my son. I have joint pain in my knees, mild hot flashes (gabapentin has helped), and vaginal atrophy. My husband and I haven't been intimate since my diagnosis, because it's just too painful. OTC remedies are too painful to use correctly (I have tried). I have been on the AI for a year now, and I have been having brain fog and memory loss. It's been so bad that I was worried I might have early alzheimer's. I was almost in a car accident a couple months ago, because I was spacing out so bad at a 4-way stop that I started to go when it wasn't my turn. That terrified me, and I still don't know why I did that. I stumbled across a study that showed AIs can cause cognitive decline and memory loss, so I did some more research and also learned they can cause high cholesterol. I have had high cholesterol since I was 20 years old. Maybe it's genetic? I spent 14 years active duty army, and in the best shape of my life my cholesterol was high. I've gained 10 lbs since menopause, but I'm still active and do high intensity, bootcamp style workouts 4 days a week. My initial bone density scan a year ago said I had osteopenia in my left hip and femur, but the right side was normal.

A year ago I was worried about getting a recurrence, but now I am worried about my overall long term health. I'm only 49, and I can't help but wonder if these side-effects are reversible after I stop taking the medication in 4 years (assuming I continue to the end). Am I risking increased chances for heart disease, stroke, or osteoporosis later in life? I know nobody here can answer that, but these are the questions I am going to ask my oncologist on Friday. I certainly do not want cancer again, but I feel completely in the dark regarding the risk of recurrence vs. the potentially life shortening risks of these side-effects.

Thank you for taking the time to read. It feels good to get that off my chest, and to people who understand what I am going through.

Was diagnosed in November and I am 64 and I am not going to take them. ER/PR+ HER2-. They for me are not worth the side affects for the marginal percentage of reward. I will do my supplements and exercise and take care of myself as best I can.

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!

@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.

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!

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."

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.

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’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.