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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I brought this up with my oncologist & she explained that estrogen also comes from the adrenal gland & stored fat, which everyone has. She did not recommend removal of ovaries as a treatment. These are hard decisions we all must face!

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Profile picture for windyshores @windyshores

I had Oncotype of 8 with risk of recurrence at 6% with meds.

I hope some of you will at least try an AI. For many of us, the side effects are minimal and addressed with exercise. Granted, some have problems on these meds. I honestly think that forums are a bit skewed by negative posts exceeding positive ones.

I already had pretty severe osteoporosis when I went on letrozole. My bone doc did not want me on Reclast or Prolia (long story, due to other health issue). The drop in bone density the first year was similar to the abrupt loss after menopause, and then eased up. I am on Tymlos now to rebuild.

I did letrozole for 5 years and felt safer on it. I did a Breast Cancer Index test at year 5 on meds, to see if there was benefit to extended treatment and the answer was no (but high risk of recurrence at 5.7% with a cut off in the 4's.). I am 8 years out.

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I am in month 7 of Anastrozole and tolerating it well. Intermittent joint soreness mitigated by warm baths and showers, yoga postures and walking… now onto knitting as weather cools. Also, at 72 I cannot rule out age associated soreness; not like it was never there before.

I avoided chemo with a beneficial ONCOTYPE and opted out of radiation as I had a unilateral mastectomy. With 98% ER+ I feel safer with Anastrozole. I worry about bone density so I’m mitigating with weight bearing exercise and extra food calcium and D3 and K2.

If your doctor recommends AI it may be worth a try; not everyone has intolerance or difficulty on this treatment. 🌸

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I was diagnoised about 9 years ago with breast cancer in my left breast. I did high dose radiation for 5 straight days no chemo required. Had a lumpectomy on the left breast. Went on Letrozole for 5 years. In year 7, I discovered a lump in my right breast. It was too large to have a lumpectomy so I opted to have a Mastectomy. I am now on Anastrozole. I could not tolerate the body aches and pains with Letrozole. Dr. is recommending 10 years on the medication this time. I already have been diagnoised with bone loss, ostopenia. Not sure what to do. I hear that Tamoxifen does not have the side effects with bone loss and body aches. If so, why aren't more doctors recomending that instead of the AI. Anysuggestions would be helpful. I have read so much that I don't know what to do.

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As I read these concerns regarding the use of AI meds, I wonder if any have had the ovaries removed or a complete hysterectomy if the side effects have been intolerable. A friend of mine had that surgery and thought it solved the problem. True? If so, why not more recommendation of such rather than just skip the meds altogether?

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I had Oncotype of 8 with risk of recurrence at 6% with meds.

I hope some of you will at least try an AI. For many of us, the side effects are minimal and addressed with exercise. Granted, some have problems on these meds. I honestly think that forums are a bit skewed by negative posts exceeding positive ones.

I already had pretty severe osteoporosis when I went on letrozole. My bone doc did not want me on Reclast or Prolia (long story, due to other health issue). The drop in bone density the first year was similar to the abrupt loss after menopause, and then eased up. I am on Tymlos now to rebuild.

I did letrozole for 5 years and felt safer on it. I did a Breast Cancer Index test at year 5 on meds, to see if there was benefit to extended treatment and the answer was no (but high risk of recurrence at 5.7% with a cut off in the 4's.). I am 8 years out.

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Profile picture for cashemire @cashemire

Ok, thanks! So the report does not calculate the chance without AI... I thought maybe it was hidden somewhere in the report but I guess they do not do that calculation.

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No it doesn’t. I think AI reduce reoccurrence 30-40% so you can add that to the score to determine % without AI.
Thank you!

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Profile picture for melomelbee @melomelbee

Hello,
To the right of the Oncotype score it says on mine the % of distant reoccurrence is 3% if taking AI or tamoxifen. I don’t think AI decrease your chance of reoccurrence by double so I was being generous by stating 6%. My odds are less
By having a mastectomy I decrease my odds even more of a reoccurrence locally and distance.
But we all will worry about it coming back forever unfortunately.

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Ok, thanks! So the report does not calculate the chance without AI... I thought maybe it was hidden somewhere in the report but I guess they do not do that calculation.

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Profile picture for melomelbee @melomelbee

No I am not taking AI.
I was advised that I didn’t need radiation because I had a mastectomy.
Best of luck to you ! ❤️

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XOXO, BLESSINGS❤️

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Profile picture for elliej @elliej

Are you taking AI? I opted out, but chose Radiation, I didnt need, but the team advised to do either one or other. I haven't started radiation yet. Still unsettled...tnx

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No I am not taking AI.
I was advised that I didn’t need radiation because I had a mastectomy.
Best of luck to you ! ❤️

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Profile picture for cashemire @cashemire

Hello,
Like you my Oncotype score is 10, but I don't see on my report where it would be 6% for distant recurrence without AI (only says 3% with AI). I had a local recurrence after 2.5 yrs, did not take AI, but am hoping local and distant are two very different things....I will try AI this time around.
Could you let me know where the 'without AI' percentage is found on the report?
Thanks!

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Hello,
To the right of the Oncotype score it says on mine the % of distant reoccurrence is 3% if taking AI or tamoxifen. I don’t think AI decrease your chance of reoccurrence by double so I was being generous by stating 6%. My odds are less
By having a mastectomy I decrease my odds even more of a reoccurrence locally and distance.
But we all will worry about it coming back forever unfortunately.

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