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

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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@sparklegram

I'll be interested to know the responses to this post.

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It is chemo and chemo kills the immune system

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@francine6829

With milk or meat, etc, can you provide a typical’s days Meals? What supplements do you take?

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Make sure if you use dairy or meat you get hormone free / organic grass fed . Up the Whole Foods fruit , veggies , nuts ect

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@cancersucks

It is a known side effect

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

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@addieg

lindalm--I am curious if there was a reason you were either not prescribed tamoxifen or did you choose not to take it? I was diagnosed with stage/grade 1 invasive ductal carcinoma and have had surgery and radiation and have now been recommended to start tamoxifen but I am very concerned with the potential side effects. My recurrence rate is around 10% without tamoxifen and 5% with it. My concern is whether or not my quality of life outweighs the potential for recurrence. Thoughts?

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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

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@francine6829

Quality of life is a piece of cake with Tomoxifen . Some oncologists are in the dark ages and will not prescribe Tomoxifen for post menopausal women. They are dumb

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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.

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@kathyomaha55

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.

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@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.

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

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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.

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@lindalm

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.

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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.

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@kathyomaha55

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/

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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.

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