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

Both radiation and anastrozole cause heart problems . My dr never told me that but my cardiologist did

Mine recurrence rate was 12 , I was put on anastrozole which I took for 3 months . It destroyed my bones , joints and much more . Finally I was not able to lift my arms enough to dress or feed myself . I decided there was no quality to my life once I started on the meds . Tamoxifen is mild compared to anastrozole . They wanted me to switch I fired my oncologist instead . I am much better now 10 months off it but still having problems . Exercise helps so I chose yoga

Oh my Francine6829, I very glad you have had such luck with Tomoxifin!! It gave me brain fog and memory loss so bad I couldn’t think straight. I also have been on Anastrozole, that gave me even worse cognitive issues, brain fog; and it seems I had an allergic reaction to Anastrozole as I broke out in hives that Itched so bad I thought I’d go crazy! I started Exemestane last week and so far, so good... Hoping I’ve found the right drug for me, but it’s really expensive, my insurance won’t pay much on the Exemestane. A 3 month prescription of It cost me over $500. If it’s the right drug for me, guess I’ll need to change my insurance to one that does cover it better.

@kathyomaha55 I was ready to have bilateral mastectomies, but the surgeon said NO and that is for precisely the reason you stated. They did partial mastectomy instead. She advised me that with full mastectomies, they cannot remove all tissue and there is so much damage to nerves with patients having nerve pain following. I am happy she went this route. I went from quite large, pendulous breasts to smaller (A to B sized) and don't have the pain anymore. The scars are really not that bad actually. The radiation on the affected side tanned that area and hid the scar and then this summer I went topless in my backyard pool and tanned the other side!!! I do have to wear a compression bra now with a Joviak serratus swell spot that should help with the hard areas resulting from prior hematomas and radiation side effects.

And that is why I did not have a mastectomy - same risk of reoccurence.

Let me know what the doctor says. Keep in mind if it does come back - it will probably come back in the brain, bones, lung or as liver cancer, That's what I keep in mind.

On another note - I went to a cancer talk on 9/12. It was really interesting – they had a panel of 6 doctors, to talk about re-occurrence.

The most interesting fact was that even people with a bi-lateral mastectomy, have the same rate of re-occurrence, as those that had other treatments. Because some breast tissue is left behind even < 2%, so this does not change the re-occurrence factor. They said they are trying to talk most women out of this for that reason. I learned a lot of stuff there.

Ah, I just read the fine print and this tool is for use after a woman has taken an AI or Tamoxifen for 5 years. This calculator then helps the doctor decide if the woman should continue the drug or not. I'm disappointed that the studies supporting this tool did not include a control group of women who did not take the drugs.

Thank-you so much for sharing that link Kathy! It shows I have a reoccurrence risk of 4%! If that calculator is accurate, then taking an AI for 5 years with a 50% risk reduction would be only a 2% difference. Not worth the risk in my view. I will include this in discussion with my new oncologist.

I agree it's really a tough decision. I also have Stage 1 IDC with the same treatment: surgery & radiation only. . When I asked my oncologist point blank about the re-occurrence rate. She seemed evasive but said this drug lowers re-occurrence by 50% (of whatever percentage I have). She was evasive on the % I have of re-occurrence. Anastrozole (I've only been on it for 10 months) is aggravating my arthritis - not fun. She also said because my tumor was ER+ my re-occurrence rate will NEVER be 0. That bothered me for some weeks, but now I have accepted that fact. I refuse to live in fear - but still wonder if the drugs help that much. I found this calculator to be of great interest. Someone posted this a while back. https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk https://www.cts5-calculator.com/

Yes, my BMI is 22 which is normal but is now considered thin. I am not sedentary; I walk 10,000+ steps a day, sometimes do yoga & take classes like zumba. When I was diagnosed with BC, I started attending a local (Rochester) meditation group and what I learned really helped me through this illness time and in developing an overall healthy happy outlook.