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

I'm so sorry to read about what you're going through. I chose not to take an aromatase inhibitor in part because I have the genetic marker for, and a nuclear family full of, heart disease. However, I question you doctor's thinking that a static could not work. My former (great) cardiologist invented the calcium store and has patients in their 90s who had their first heart attack in their thirties and are alive and active today. Please do search out some more proactive physicians. I had to do it after moving to a new area but it was worth it. I've had high cholesterol for a zillion years but the echocardiagram of someone decades younger. And I cannot take statins. The human body is complicated and fascinating and isolating a variable here and another there does not tell the whole story. Best wishes in getting a new medical team to work with you.

I'm so sorry to read about what you're going through. I chose not to take an aromatase inhibitor in part because I have the genetic marker for, and a nuclear family full of, heart disease. However, I question you doctor's thinking that a static could not work. My former (great) cardiologist invented the calcium store and has patients in their 90s who had their first heart attack in their thirties and are alive and active today. Please do search out some more proactive physicians. I had to do it after moving to a new area but it was worth it. I've had high cholesterol for a zillion years but the echocardiagram of someone decades younger. And I cannot take statins. The human body is complicated and fascinating and isolating a variable here and another there does not tell the whole story. Best wishes in getting a new medical team to work with you.

Do you mean your Oncotype score was 4 with anastrazole? So the score itself was 8? That is a very low score, relatively low risk. What was the grade of your cancer, and any lymph nodes positive, or lymphovascular invasion?

That is quite a list of possible side effects. I believe the lipid rise is a known side effect. Do you think there are any other possible explanations for other side effects? Blood pressure is very variable anyway...

I wonder if you could switch to Femara, or switch brands, or take a half dose or alternate days. The package insert for Femara cites a study showing that 20% of the recommended dose is effective. My doc okayed a half dose (alternate days) but I stayed on a full dose.

I hope the monitoring is helpful. Regardless of cause, your symptoms sound scary and monitors are sometimes reassuring and in any case will tell you what is going on.

For what it's worth, i looked at my OncotypeDX report and the risk isn't half of the score. The Recurrence Score (RX) Result is 9. And the Distant Recurrence Risk at 9 Years is 3% [if I take Tamoxifen or an aromatase inhibitor]. The oncologists I saw say that the current thinking is that the meds can reduce the recurrence rate, all other things being equal, by about 42%. That would make the 3% risk a 5% risk if I do not take Tamoxifen or AIs. Nothing about this BC journey is certain but I'm hoping Oncotype is correct or errs to the conservative on this.

You are right: I was at best being approximate. The score can be 8, the risk can be 6 without meds, and the risk with meds can be 3, for instance. The Oncotpye gives score and risk and % risk reduction, which is approximately 50% of the stated risk, not 50% of the score (as I implied).

Other tests consider 5% "high risk." t is counterintuitive perhaps, but that is the case. In a room of 20, one person.

It is also good to distinguish between local recurrence and distant spread. Does Oncotype now do that?

For what it's worth, i looked at my OncotypeDX report and the risk isn't half of the score. The Recurrence Score (RX) Result is 9. And the Distant Recurrence Risk at 9 Years is 3% [if I take Tamoxifen or an aromatase inhibitor]. The oncologists I saw say that the current thinking is that the meds can reduce the recurrence rate, all other things being equal, by about 42%. That would make the 3% risk a 5% risk if I do not take Tamoxifen or AIs. Nothing about this BC journey is certain but I'm hoping Oncotype is correct or errs to the conservative on this.

Great information. Aromatase treatment is for 5 years; however, is there no benefit after 2, 3 or 4 years. Many stop treatment early because of side affects. Does that mean they have gained nothing. Others do the full 5 and end up with serious health issues. I myself would not have known the internal side effects if I hadn’t started having fainting issues. Though informed of my family history, the oncologist did not do any testing either before or after to note changes, such weight gain, hi BP, cholesterol etc. Now it very tough to pin down the cause. Try though I may, I have not found numbers in percentages of benefit of the drug at year 2, 3 etc. It seems at the 5-year mark the benefits arrive, not before. After 3 years, why isn’t a patient told you have gotten some
benefit or is there none until 5 years?

@callalloo Yes, she did provide a reference regarding the beneficial effect of dried plums on the bone density of post-menopausal women. I believe it was the Florida State University study mentioned in this article: https://plantmedicines.org/dried-plums-prevent-bone-loss/
@gillooly, Your side effects from anastrozole sound horrendous. I just started this drug myself, with trepidation. Like you, I have had no early bad side effects, so far, just some leg cramping that I can deal with. Also, my most recent BP was 118/69, which I would like to maintain. Your estrogen level of 11.7 seems really low so that one has to wonder if estrogen blocking would be that helpful, which I think is reflected in your ONCO numbers. (In comparison, my estrogen is +98, PR +97, ONCO 8. and distant recurrence with AI/Tam at 3%, so w/o a hormone blocker about 5-6%) From what I understand, AIs reduce local, regional, and new primaries about 50%, and distant recurrence about 35%. Grade, size of tumor, surgical margins will all affect this risk. Are you going to get a second opinion for treatment? I did, and I found it helpful.