1. < Breast Cancer

Take anastrozole for the rest or your life?

Posted by sandyjr @sandyjr, Jul 28, 2023

My friend is 76. She has had BC twice…once in each breast. The last time was 4 years ago. Her oncologist told her she would have to take anastrozole for the rest of her life. Our cases are similar…different oncologists and I am 73…I was told I would finish after 5 years. Has anyone been told this or is currently taking it for the rest of their lives?

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joannemm34293 | @joannemm30809 | Jul 30, 2023
In reply to @anjalima "How are you doing with bone treatment?" + (show)
@anjalima

How are you doing with bone treatment?

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I was just recently diagnosed last week with IDC and my first visit to surgeon Olay Moffitt in Tampa is August 7.

I am totally overwhelmed by all this and the waiting waiting waiting to be seen is insane.

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sequoia | @sequoia | Jul 30, 2023
In reply to @whr "In going back in my mind I had the onco test. It showed the benefit from..." + (show)
@whr

In going back in my mind I had the onco test. It showed the benefit from chemo would not be any greater than taking Anastrozole, so that was why I took it. However at no point were the hormone levels checked to see if it was working. After my decision to stop taking it the oncologist said, "given how slowly you metabolize meds, we could've done a lower dose", too late for this lab rat.

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@whr that was same situation for me. My oncologist (new since other retired) suggested onco test. Numbers very low. Estrogen level never checked before during or after. 🤷‍♀️. We must advocate for ourselves. Stay strong

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2 replies
sequoia | @sequoia | Jul 30, 2023
In reply to @windyshores "Tymlos returned me to spinal bone density that is better than when I started letrozole. I..." + (show)
@windyshores

Tymlos returned me to spinal bone density that is better than when I started letrozole. I had a 20% gain in spine which is miraculous- from severe osteoporosis to borderline -2.5. Hip gain was 9% up to -2.9. However femur neck is still -3.6, up from -4.1. Tymlos is better with spine than hip. I was able to get on it by ramping up the dose: the pen comes with clicks that measure dose. Next step is Reclast but doc is infusing only a 20% dose to test my tolerance and kidneys
reaction. I am also working with a nephrologist.

Thanks for asking. My kids cannot get over how much strong I am and I walked 10 miles two days in a row with my daughter in Brooklyn!

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@windyshores congratulations on your bone improvement. Tymlos seems to be working for you. That is wonderful you have improved that much to walk the 10 miles. Keep On Keeping On. 💪🏼

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whr | @whr | Jul 30, 2023
In reply to @sequoia "@whr that was same situation for me. My oncologist (new since other retired) suggested onco test...." + (show)
@sequoia

@whr that was same situation for me. My oncologist (new since other retired) suggested onco test. Numbers very low. Estrogen level never checked before during or after. 🤷‍♀️. We must advocate for ourselves. Stay strong

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I totally agree, we need to ask questions and advocate for ourselves. Side effects are worse for me than for many others because I metabolize everything so slowly so the dosage needs to be adjusted, and results monitored. Your doctor has to be on board with "one size does not fit all", like clothing, lol.

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sandyjr | @sandyjr | Jul 30, 2023
In reply to @sequoia "@whr that was same situation for me. My oncologist (new since other retired) suggested onco test...." + (show)
@sequoia

@whr that was same situation for me. My oncologist (new since other retired) suggested onco test. Numbers very low. Estrogen level never checked before during or after. 🤷‍♀️. We must advocate for ourselves. Stay strong

Jump to this post

I have another question? Are the people that are doing the BCI and Oncotype having genetic testing done before? I had the Oncotype test done after the second time I had BC. I was not aware of it the first time which was 2007. My score was low enough that I did not have to do chemo. After I had that test I had genetic testing done because it was a second time I had cancer. I have the CHEK2 genetic mutation. So my feeling is that neither one of those test could accurately predict anything for me. My assumption is that most of the people that are doing this testing have not had genetic testing done. So how does this work out in that case? So you think that you are doing something to relieve your anxiety and give you some peace of mind, and basically, I am wondering if we are not just a huge experiment.

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1 reply
joannemm34293 | @joannemm30809 | Jul 30, 2023
In reply to @windyshores "@joannemm34293 a high ER (and PR) means that aromatase inhibitors (or tamoxifen for pre-menopause) should have..." + (show)
@windyshores

@joannemm34293 a high ER (and PR) means that aromatase inhibitors (or tamoxifen for pre-menopause) should have a high level of effectiveness. The scores make the cancer more treatable, in other words.

I asked the Breast Cancer Index people why extended treatment had no benefit for me, with those high ER and PR scores and a low Oncotype. They explained that the Oncotype looked at how many cars were in the road and they looked at the speed of the cars (or vice versa, I cannot remember).

I would think the BCI result would show that my cars were moving slowly but then I had a high risk of recurrence of 5.7% (they have since changed their labelling of risk).

It's hard to base our decisions on Oncotype, BCI and other testing but we don't have much choice. My bones needed attention or I might have continued another two years anyway. One oncologist said I could two more years anytime so once my bones are taken care of (almost done Tymlos) I might go back and ask about that. Letrozole would not be to treat but to prevent.

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Was wondering how f you know if feeling tired and fatigued BEFORE any treatment etc even starts is normal when first being diagnosed with IDC?
I’m so fatigued and I have not even been to Moffitt yet to start any treatment yet I’m just totally fatigued.

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1 reply
anjalima | @anjalima | Jul 30, 2023
In reply to @windyshores "Tymlos returned me to spinal bone density that is better than when I started letrozole. I..." + (show)
@windyshores

Tymlos returned me to spinal bone density that is better than when I started letrozole. I had a 20% gain in spine which is miraculous- from severe osteoporosis to borderline -2.5. Hip gain was 9% up to -2.9. However femur neck is still -3.6, up from -4.1. Tymlos is better with spine than hip. I was able to get on it by ramping up the dose: the pen comes with clicks that measure dose. Next step is Reclast but doc is infusing only a 20% dose to test my tolerance and kidneys
reaction. I am also working with a nephrologist.

Thanks for asking. My kids cannot get over how much strong I am and I walked 10 miles two days in a row with my daughter in Brooklyn!

Jump to this post

Wonderful news!

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jul 30, 2023

The question of these tests comes up a lot. Which I always find fascinating because when I was diagnosed they didn’t exist. My last most amazing doctor, and my current less amazing doctor never ordered any either. I have zero experience with them but wish I had the opportunity.
I did however have genetic testing done, not when I was diagnosed but much later, I have PTEN cowden syndrome. So pretty much breast cancer before 40 was in the cards.
I took tamoxifen for 5 years and anastrazole for 10, since I still have the hot flashes, I should have just stayed on it the rest of my life. Then again, bone destruction and horses probably isn’t a great plan.😂
Thank you one and all for sharing your stories, what tests you had and what decisions you made.
How many of you would stay on the drug to lessen you re-occurrence risk?

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1 reply
mossa | @mossa | Jul 30, 2023

I’m on anastrozole. I’m not thrilled with the way it makes me feel and I will be on it for the next 9 1/2 years. My maternal grandmother, paternal grandfather, 2 uncles and an aunt all succumbed to their cancers. I will take my anastrozole until something better comes along. We all make choices that reflect our life experiences and I’m glad there is respect and acceptance for that.

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windyshores | @windyshores | Jul 30, 2023

If I had continued, I would have done 7 years, not 10, because I was told 7 was just about as good.

Want to clarify again that the Breast Cancer Index is only approved for use after 5 years of hormonal treatment and is only about risk of recurrence and benefit from doing more than 5 years. You can, like me, have high risk but no benefit. Or low risk and yes to benefit. Or low and no or high and yes.

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