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

Wow, I don't like that the labs got different results. I'm not totally surprised but it is disturbing. Kudos for your persistence and the help you provide to others here who might be at the beginning of this unintended journey,

In my case there was a dramatic difference between post-surgery pathology (grade 3, LVI, high ki67%) and Oncotype (low).

As for relying on lab technicians, well, one lab had me as HER2+, one had me as HER2 equivocal and one retested and got a negative- actually 4 different hospitals' labs.

If I had stayed with the first hospital I would have had chemo and been treated for HER2.

I asked for retests at three different oncology offices, and the tumor board also refused. The fourth doctor retested HER2 using 60 cells instead of 20. Ductal cells were positive but HER2- dominated so no Herceptin.

That 4th doctor also retested Oncotype and told me I could choose chemo if I wanted to. It was up to me. All the other oncos, two at major world class hospitals, relied entirely on the Oncotype.

It looks clear to me if I'm interpreting it correctly. I understand the sentence to indicate (correctly) that the OncotypeDX isn't considered useful in selecting the "kind" of chemo plan for those whom it considered would benefit from chemo. Since the OncotypeDX has zero to do with recommending any chemo prescription, the lack of consensus is appropriate though I'd rather the doctors agreed 100% that 'the type of chemo' isn't even being tested.

The people at Oncotype told me that they're still (after much doctor education efforts) hearing of physicians who have their patients take the OncotypeDX to make radiation selections, which the test is also not designed for.
[And, as noted in earlier posts, breastcancer.org is, incorrectly, reporting that the test determines whether one should have radiation. ]

So patients unfortunately just need to be very proactive, as most of us thankfully are here, in evaluationg information and data to get the valuable meaning out of it.

And I would be very concerned if my oncologists relied totally on the OncotypeDX either. Identifying and treating cancer is a process over time, starting with gathering quality data, making the best decisions at the time and changing course along the way as needed by results, newer/better meds, etc. The first critical information, to me, would be the post-surgical biopsy, signed off on by two pathologists I hope, that describes the mess of cells and their behavior. With hopefully wide-enough clean margins. Any two data points that seem to be in conflict would, for me, trigger retesting. Any doctor, lab or lab tech can make a mistake, mislabel a sample, have a bad day and pay insufficient attention to protocols, etc. So I hope that doctors are not relying solely on any one data point.

I sometimes think of the patient's responsibility for self-guardianship as the old adage of 'no rest for the weary' but it is what is is and can save a life.

I would also like to see those studies. I was on letrezole for only 4 months after a bilateral mastectomy for invasive lobular carcinoma, er+, pr+, Her2- , grade II, stage 1A, before I developed very painful carpal tunnel symptoms with trigger thumbs on both hands and body aches everywhere, that kept me from sleeping. And brain fog with some depression thrown in. My oncologist suggested a break. I don't know for how long. I have been off the drug for two weeks and the body aches are better. Depression and brain fog is better, but the carpal tunnel and trigger thumbs have not resolved. I have tried physical therapy and ibuprophen. It's very difficult to think of going back on AI's. I am 69.

I found that to be true also, if I was not hydrated enough on a day, I would wake up with the dizzies. I learned this quickly and stayed hydrated and no more dizzies. Dizzy in my world is really bad.
Did you take any other treatment, like chemo or radiation? Did you have the dizzies with any of that?

I don’t remember if it’s because of the anastozole or the Prolia, but I try my very best to drink my 64oz a day, that doesn’t include my coffee. And actually, I feel so much better after a glass, it’s like my body is telling me.

I should probably start a new thread, but this is about starting and maintaining AI therapy. I want to ask the group, have any of you had serious issues with dehydration? I mean, it has been serious (like hospital serious) and I have to keep after this daily or...well, the dizziness in the a.m. is the worst. Otherwise I am healthy except feeling 10 years beyond my age of 72. I know some of you opted for brand name versions of the drugs (I'm on Anastrozole currently). Did it make any difference? I've been on this drug since October of 2021.

I have invasive lobullar CA , ER/PR + HERS neg , had SX completed radiation. I am seriously considering not taking anastrozole due to my own health history (encephalitis) in my youth didn't leave me severly impaired but definitely work harder to be average? What is the actual percentage rate of preventing reoccurence ILC (I had total hysterectomy) how do I get this info?

Thank you so much. I’ve managed to calm myself down and realize that. I’m having a few hot flashes but nothing bad. It’s a lot to take in. I think after my surgery on June 22 I’ll be able to focus better and I get that behind me. Take care.

I took Anastrazole for 5 years with no major issues but the biggest thing you need to remember is that everyone is different and how medication effects you, may be be different from someone else. My side effects happened over time and didn’t last long from the time they started. I had hair thinning but it wasn’t noticeable. My hair stylist would tell me and recommend using certain hair products but again I didn’t notice that much and if you’re stressed, that can also cause side effects like fatigue but I would always remind myself of why I am on this drug and how it will benefit me in the long run. Take care!