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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@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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I would love to see a study/data on results of breast cancer patients who did not choose AI. Thanks

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I, too, struggle with similar concerns. My docs at Mayo, told me I didn’t have to have AI or radiation. BUT, they made me feel foolish in not choosing one.

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@vsunshine18

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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I also have osteopenia and I asked my med-onco about Exemestane (Brand name Aromasin) which is an AI but is also steroidal and protects bones. I’ve been on it for about a month now with no side effects. I guess I could get side effects at any time but for now I’m happy to have none and better bone protection. This is only for post-menopausal women so if you aren’t there yet it’s not for you!

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See my comment below. I am also in my 70s and concerned about bone loss as I have osteopenia. There is a steroidal AI that protects against bone loss. It is Exemestane (Brand name is Aromasin). After about a month I have no side effects. Guess I still could but for now I’m happy to have better bone protection.

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@melomelbee

I had an 95% estrogen positive /5% progesterone positive breast cancer. I chose a bilateral mastectomy and had that done 9/13/22. My Oncotype DX score came back at 10. No chemo
Oncologist wanted me to start AI. The Oncotype report stated even on AI there was only a 3% chance of reoccurrence. So I chose not to do AI as I have a 6% chance of reoccurrence.
I will take my chances, exercise, limit alcohol, eat well and avoid the damage AI cause.

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I feel the same way as you. I have been taking AI for 2 months following a lumpectomy at the end of May. I opted not to have radiation. My oncotype was 5. I have been having some worrisome side effects from the Arimidex: my knees hurt worse than before and my dry eyes are also worse. The hot flashes are also annoying. I am very concerned about the long term effects on bone density, cognition and memory loss. I have been quoted the same percentages of recurrence as you have---6% if I don't take the AI, and 3% if I do. I am seeing my oncologist next month and will probably quit the AI.

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@anjalima

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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@anjalima I finished my full course of an AI 🙂

To others, I did 5 years on letrozole and already had severe osteoporosis. My doc did not want me on Reclast or Prolia (long story) so I was unmedicated. I had a dip in bone density when first on letrozole (similar to the drop at menopause) and then the loss was much much gentler. I am now on Tymlos.

I was more afraid of cancer than any side effects, or bone loss. I felt safe on letrozole. I miss it!

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My concern is how the AI will effect my heart. Letrozole is the prescribed drug but I am waiting to take it until I have a CAC scan next week. Am I the only one worried about cardiac calcification and a potential heart attack? Maybe this is not as great a risk as I have cooked up in my mind? (It would be nice to be wrong about this.) I feel like I have to choose between a BC reoccurrence and a heart attack.

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@melomelbee

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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My oncologist quotes very different percentages. In late May, I had an invasive DCIS lumpectomy with a lymph node removal that was negative. Surgeon says they got it all. My oncologist says if I don't take AI [anastrozole] I have a 7% chance of a recurrence. If I do take it for 5 years, I have a 3% [absolute] chance of a recurrence. This is making me re-think whether I want to risk the long term serious side effects like bone thinning, cognition and memory issues which can show up after 18 months to 2 years. I am going to discuss it with the oncologist in a few weeks during my next appointment.

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@tenayalake86

My oncologist quotes very different percentages. In late May, I had an invasive DCIS lumpectomy with a lymph node removal that was negative. Surgeon says they got it all. My oncologist says if I don't take AI [anastrozole] I have a 7% chance of a recurrence. If I do take it for 5 years, I have a 3% [absolute] chance of a recurrence. This is making me re-think whether I want to risk the long term serious side effects like bone thinning, cognition and memory issues which can show up after 18 months to 2 years. I am going to discuss it with the oncologist in a few weeks during my next appointment.

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I cannot common in DCIS invasive, so my comments are for IDC itself:

I don't personally know anyone who has cognition or memory issues on an AI, and I don't seem them listed as side effects.

I had severe osteoporosis, as I have written previously, and did 5 years on letrozole. Most people also take a biphosphonate during the AI treatment but I was unable to. I am now on Tymlos.

I would rather deal with some bone loss than cancer. The Breast Cancer Index, at the time I had that test, considered any risk over 4.7% as "high." It is up to your doc and you whether 3% versus 7% is significant.

Another factor might be your ER score. Since your Oncotype was low, I assume your ER% was high.

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@elliej

I would love to see a study/data on results of breast cancer patients who did not choose AI. Thanks

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I would like to see study also

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