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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Profile picture for lisajoann @lisajoann

If you don’t me asking what stage were you, and did you have a lumpectomy or mastectomy ?
I was stage 1, no nodes, grade 3, lvi… I had lumpectomy, chemo and radiation… and now AI.
Seems our treatments are very different. Just curious.
Thank you

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Cancers vary significantly and two that have similar stage, grading, etc. can have different prognoses and treatment paths. I think that we rely on the art, as well as the science, of medicine when we have good doctors. And reassuring second opinions are always welcome.

I had a Stage 1A cancer that was, in a sense, plain vanilla. A friend had a Stage 0 that required more complicated surgery due to location and closeness to bones. (The surgeon took some bone tissue to biopsy as well.) We both had the OncotypeDX tests and her Oncotype risk of recurrence was 1% lower than mine. Both were low though and we hope they match future reality.

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I was stage 1, and had two mastectomies. I was told one out of 5 radiologists might suggest radiation. If I had a lumpectomy, of course I would have had it. The tumor board and my three opinions were all against chemo due to low Oncotype.

In 2012 the Oncotype was around. I don't know when it became standard of care. My diagnosis was 2015 and at that time, all the docs seemed to rely on it more than grade and other pathology.

ki67% is one of several proliferative factors in the Oncotype so apparently my highish k167% didn't affect the Oncotype. One doc said that a healing biopsy site can cause a highish ki67% which I thought was interesting.

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Profile picture for tygerrag2 @tygerrag2

what is considered a high Oncotype score?

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I really dont know bc I didn’t have it done. I was told with lvi.., chemo was highly recommended. So it was never discussed… this was in 2012.

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Profile picture for windyshores @windyshores

@lisajoann I had grade 3 and LVI and ki67% just over the line for high, but a low Oncotype. The Oncotype would still be possible with the specimens from your surgery but would serve no purpose since you have already had chemo, and already made it 10 years. I was told that 30% of grade 3's have low Oncotypes. It would be no different with Oncotype at this point.

I also worry all the time about it coming back but as I said my docs don't do tumor markers. I had a Breast Cancer Index done and a Prosigna Assay, at the 5 year point, using specimens from post-surgery pathology. The Breast Cancer Index showed no benefit from AI in years 5-10 so my only treatment has been mastectomy and 5 years AI. You have done everything possible and I wish you good luck!

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If you don’t me asking what stage were you, and did you have a lumpectomy or mastectomy ?
I was stage 1, no nodes, grade 3, lvi… I had lumpectomy, chemo and radiation… and now AI.
Seems our treatments are very different. Just curious.
Thank you

REPLY
Profile picture for tygerrag2 @tygerrag2

what is considered a high Oncotype score?

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18-30 is intermediate, 31 and over is high

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Profile picture for windyshores @windyshores

@lisajoann I also had LVI but no chemo or radiation. Was your Oncotype Dx score high?

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what is considered a high Oncotype score?

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It's true. If you're prescribed the ultimate treatment possible anyway, why quibble over numbers at that point?

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Profile picture for lisajoann @lisajoann

That was never mentioned to me sadly, I had grade 3 and my ki67 was high so they just said we highly suggest chemo and radiation. I did tamoxifen and now SI. At this point it’s 10 years in and I wish I had it done. I worry every day if it’s coming back… horrible way to live. My concern are my cancer markers… they fluctuate . Scares me.

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@lisajoann I had grade 3 and LVI and ki67% just over the line for high, but a low Oncotype. The Oncotype would still be possible with the specimens from your surgery but would serve no purpose since you have already had chemo, and already made it 10 years. I was told that 30% of grade 3's have low Oncotypes. It would be no different with Oncotype at this point.

I also worry all the time about it coming back but as I said my docs don't do tumor markers. I had a Breast Cancer Index done and a Prosigna Assay, at the 5 year point, using specimens from post-surgery pathology. The Breast Cancer Index showed no benefit from AI in years 5-10 so my only treatment has been mastectomy and 5 years AI. You have done everything possible and I wish you good luck!

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Profile picture for eku @eku

"No offense, but it seems a lot of oncologists are cheerful and reassuring….."

Lol, come meet mine... She looks at me like she is at my wake.

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I had three opinions. There were a lot of discrepancies in my testing and things were not looking great in pathology results. I liked my third doc the best, because she looked serious, said she didn't blame me for being "troubled," and agreed to further testing to settle some questions. The other two were cheerful and kept telling me I would be fine. I understand both approaches, and we all react differently. This was an intensely frustrating search for a doc to take my questions seriously and I did not mean to insert it in a discussion with a very different focus.

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Profile picture for windyshores @windyshores

@slfisher1976 I didn't remember what that classification meant.

In stage 1A breast cancer, the tumor measures up to 2 centimeters, but there’s no lymph node involvement. With stage 1B breast cancer, the tumor is less than 2 centimeters, but there are small clusters of cancer cells in nearby lymph nodes.
and
Stage 1B: Cancer between 0.2 mm and 2 mm is found in the lymph nodes (the breast tumor can’t be detected or is smaller than 20 mm).

The NX means the lymph nodes cannot be evaluated.

Not sure what it means if the nodes cannot be evaluated but you are 1b!

No offense, but it seems a lot of oncologists are cheerful and reassuring.....

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"No offense, but it seems a lot of oncologists are cheerful and reassuring….."

Lol, come meet mine... She looks at me like she is at my wake.

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