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

No I was commenting on the doc's idea that radiation was presumed by the Oncotype. Lots of us have mastectomies with no radiation, and the Oncotype is used for us. Strange.

I agree that it's strange. And illogical. Clearly the radiologist is wrong. And it seems as if the oncologist was just deferring to her as radiology is her wheelhouse or something. Making them both wrong. One is tempted to ask why they even recommended the OncotypeDX test if they don't understand it.

@windyshores I saw the oncologist today and kind of understand where he sees my OncotypeDX issue (whether it 'presupposes' radiation or rules it out as a pre-test variable) as an instance of apples and oranges. Not sure I agree but it would take a call to my former Decision Analysis professor to understand better and he would likely explain things in terms that lose me in the explanation of p squares and multiple discriminant analysis and stuff I don't remember so mental self-preservation suggests a wiser path of not digging further but instead go sailing. The Gulf Stream is indigo therapy for too much thinking of late. And I already declined radiation so that ship has sailed anyway.
For those still interested, the issue is the underlying criteria of the TailorRX data base and how Oncotype used it as a confirmatory tool...using a data base that included (but not limited to) patients who had radiation, if and only if, it was recommended. But precluded patients for whom it was medically recommended but who opted against it.
The good news is that he thinks the OncotypeDX is very sound and its risk number for me (5% if I skip AIs, had no radiation or chemo) probably valid. And that he would have thought my risk of recurrence similarly low based on his 25 years as a breast cancer oncologist.
I explained my 5 weeks experience on anastrozole and genetic marker for heart disease and a family tree filled with people who died of coronary issues. And the knowledge that I would have to take osteoporosis meds almost immediately if I took anastrozole and have decided to pass on the drug for, for me quality of life concerns being already older and having lost 2 years and opportunities for joy due to covid lockdowns and isolation, social discontinuities, etc.
If new compelling data, meds or protocols come along that merit consideration, I'll look into them too. This field of medicine is rife with good news in the pipeline. I told my doctor(s) that I'd be willing to participate in any study that might be of value in any way. There is no 'did nothing post-surgery" data to rely on but a growing number of (especially older) women are taking that path and eager to contribute to the science in anyway.

Anyone would respect your decision and other older women are doing the same.

I will once again say that I had a bad experience with generic anastrazole but did well with brand name Femara (and would have done okay with a different generic brand no doubt). And I already had osteoporosis for several years when I started Femara. The drop in bone density for me resembled the drop in bone density at menopause: the first year a 5% loss and the following 4 years for me 2%, which was my rate of loss before Femara. Just fyi.

After saying that, wishing you the best and hopes for all of us for less COVID limitations in life and good health to you!

Thank you for this and all you contribute here. I agreed with thr oncologist going forward. I'll stay current with self-exams and a schedule of doctors' exams and mammograms. And will do blood work every 3 months to keep an eye on tumor and other markers. And reserve the option to reconsider if variables change. So he and I are a team now and the patient portal is excellent for getting questions to the doctors and promised responses with 24 hours.

On a different note, your experience with a generic was interesting. Someone on another thread had a markedly better experience with the brand-name of an AI versus a generic of the same med. And someone elsewhere posted about very sudden side effects on a generic she'd been taking for a long time then discovered that her pharmacy had recently switched to a different manufacturer. Maybe people having side effects can benefit from just changing to the brand if possible or a different pharmacy to try it a different company's generic version. (We saved a pet's life once doing just that for what it's worth. )

I'm going explore diet variables too. One of the surprises to me in reading so much cancer since September's surprise Bad Biopsy News is seeing so many studies linking cancer and diet. Whereas I've seen all the public service ads taking about overweight in general terms, I didn't think it a cancer risk. Nor did most of my friends when I asked them. Clearly there's a complicated interplay at balance. The endocrinologist stressed how much is still being learned about, for just one example, how complicated body fat is as a system and it's affect on certain cancers. That might be one area where we can impact on estrogen levels even if not taking AIs.

I agree. Femara was a better choice for me, but by then I had been through 3 types before I was able to talk the oncologist into femara. The difference was incredible, but the damage from the previous 6 months on the ones with all the fillers was just too far gone. My onco told me all I can do now is pray..... Ridiculous! Not saying I dont give thanks to God for every day I live now, but I also see all the side effects from drugs in general, and I am amazed at what I accomplished without drugs and focusing on diet and excercise. I am 68 and have never felt better in my life, so i will gladly pray, eat well, and live my life to the best it can be.......

@jeaniebean
I tried to reply to this but might have misclicked and didn't send it. But kudos to you and everyone here for doing the other things we can do to help our bodies. The body is amazing and who knows which variables come into play when we pay attention to the basics?

For what it's worth, the onco I saw today warns against raloxofine, being neither great at protecting bones or protecting against breast cancer. As SERMs go, he thinks Tamoxifen is better and has way fewer really bad side effects.

I had a second opinion consultation with a very reputable breast center (UCSF) oncologist today regarding treatment. He advised against my continuing on tamoxifen because 1) it is not as effective as AIs in lessening recurrence risk 2) it has long lasting negative and serious side effects and 3) risks of DVT and endometrial cancer increase with age. He stated that the Oncotype DX test score is for now the best predictor of risk, so a drop in METS risk from 5-6% to 3%, as well as the 50% risk reduction in a new primary or regional/local breast cancer, with an estrogen blocker is worth the try. He also said that only 1 out of 3 women on an AI has terrible side effects, and even if I can only take it for one year due to SEs, that one year is better than no year, sort of like working a crummy job but still getting paid. So, in my case, I have decided to try an AI, keeping a keen eye on my bone density and taking supplements and doing strengthening exercises. I think we can all agree that we don't want any BC recurrence, a distant metastasis least of all. As my breast surgeon says, our goal is quantity (of years) and quality (of life).