Concerned about the side effects of anastrozole

There were a lot of them. I watched two. One was about different medications for MBC. This looks like a good one! I am going to watch it so thanks 🙂

I found the complete playlist of all 12 videos from the 2021-2022 EMBRACE Metastatic Breast Cancer Virtual Forum
Click the 1/12 in the upper right corner of the video window to select from the video list.

I have been on Anestrozole since February 2020. Had a problem at first with joints and now doing fine. However, my osteopenia went to osteoporosis. I had my first Prolia shot in January and I am on Osteo-K for bones.

Here's what I have learned in just the past week (personal experience). I am 100% in favor of pursuing anything that will keep cancer at bay. Having said that, I have been on anastrozole since October 2021 (after 2 yrs) Tamoxifen. I am 72. I am supposed to be on this for 8 years. Can't imagine it at this point, only because of the way I'm feeling. Having said THAT, I am determined to change my entire way of living to make this work. I was so good with lifestyle habits when diagnosed in 2019, and all through chemo and radiation (I actually felt better then than I do now). So what changed? After chemo, I thought I could "treat myself" and eat what I wanted...didn't exercise as much and got a super high pressure job the exact same time I started the AI. Last week I ended up in the hospital by rescue (an absolute first for me) because my electrolytes tanked and my BP skyrocketed. Prior to that, my blood results were stellar. I suspect that my bad habits caught up with me (true, I have never smoked and I don't drink -- but there are other ways to have bad habits). Stress, yes (and it might be exacerbated by the AI) is a killer: cancer survivor or not. I am convinced that if these AIs are going to work for anyone, they need to be an A+ student in self care. There are no short cuts. And, you really need to pay attention -- every day. Anyone care to comment about a similar experience?

I will be going for my 5 year evaluation (since surgery and beginning treatment) and I understand that when we have our discussions here, it’s anecdotal information with helpful links. But it’s also been very helpful in that I am starting to prepare my questions for my evaluation and I am not quite confident about what my oncologist will advise and we are assuming that my exams and MRI will all be clear.

What did strike me in our discussions here, was all the info about the OncotypeDX. It prompted me to look at my score because for me, emphasis was placed on one score that determined that I would not benefit from chemo at my early stage. However, I looked at my other score/percentage for recurrence and it was much higher than others here who had my same number and talked about it here. (For example, if someone also had an 8, their recurrence was 3-4%.)
So some of my questions, if they aren’t addressed already by the oncologist, will have to do with that number, my tumor grade, and the bilateral cancer.
I appreciate that we can share, hopefully make us think, ask questions, and advocate, but not necessarily panic.
Will keep you posted! 🤞🏻

I made it to 4.8 years on anastozole (the doctors being very proud of that) as well as Prolia. I was not without discomfort but I also was doing my best to be a good patient. Everything changed since October with signs leading up to it since July. So I stopped with 3 months to go after discussions with each doctor in January. I do appreciate the info about osteo-K because once I get my BMD, I want to keep any good results without resorting to another medication that will cause everything to hurt. Thanks.

I think you're confusing the OncotypeDX results. The Recurrence Score is a trademarked name for some elements of the results from the algorithm Oncotype uses for the test that suggests the Risk of loco-regional Recurrence within 9 years if the person whose tissue was tested takes tamoxifen or aromatase inhibitors. I had several conversations with Oncotype after getting my result and it's my understanding that one cannot infer much from the Recurrence Score directly except that lower is better. And the Risk score is derived from it.

Oncotype's customer service is excellent and a call to them could help understand what the test can imply and what is outside the scope of the testing parameters.

I had a score of 8 and risk of 10 year recurrence was 6% with tamoxifen only. I assume my risk was close to 12% without meds. (At the 5 year point, the Breast Cancer Index test indicated no further benefit from my AI. Risk of late recurrence 5.7%).
ps I was either grade 2 or 3 and not sure how that affects risk score. I thought everyone with a score of 8 would have the same risk but @callalloo has the same score but lower risk at 3%.

I did not know about the Breast Cancer Index test. I looked it up and they need to use preserved breast tissue? Oncotype was done immediately after surgery. This test would be done now and give a different type of result? While reading about it, I learned that it tests the activity of 11 genes.

At the time of my first year check up, my surgeon put me in a genetic trial (My Risk) to see if there were genetic factors that contributed to my original diagnosis. There were no mutations for breast cancer. I have 1 mutation that has not been determined to be benign or pathogenic for breast or ovarian so it’s a “variant of unknown significance”/ VUS. I was told I would be contacted immediately should more be determined about the variant in the future. Breast tissue was not used. It was a blood draw.

I will keep this in mind as one of my questions in July.

I struggled with side effects initially but now I seem to be tolerating it well. I think my issues were enhanced by also stopping Bio-identical hormones 5 months earlier. A lot of changes all at the same time. No hair loss. My issues were joint pain, hot flashes, and emotional imbalance.