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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@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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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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@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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Hi Everyone. I got the all clear on my MRI after 5 years on anastrozole and Prolia. We decided to do one more Prolia since my bones are stable now after the anastozole had put me into osteoporosis. My spine is improved, my hips, stable. I will have to take something starting in January to prevent something called rebound affect from the bone medication. Apparently, there can be a decline if you don’t do something to maintain your progress. Otherwise, no more treatment, 2 year MRI. Implants have maintained their integrity although the consensus is that my reconstruction is too tight. I will continue to check in to help support everyone on their own journey. The oncologist told me that they are very close to a DNA test that should be reliable for detecting recurrence and he has a lot of confidence that it will be approved. Thanks for all of your own posts that helped me ask all the right questions.

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Anestrozole caused dreadful side effects - trigger fingerS - hair loss.

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@chickie

Anestrozole caused dreadful side effects - trigger fingerS - hair loss.

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Yes, I had hair loss; constantly wiping the shower and swiffering floors. But it sheds and comes in, sheds and comes in…I could actually feel the tiny hairs. When I finally got brave enough during Covid to go for a good haircut, the stylist actually asked me if I had had Covid because many of his clients lost hair due to Covid. I did not explain why…it also turned my gray hair to Snow White. I am lucky to have thick hair.
My husband has problems with his hands where he gets trigger finger. His hand surgeon has an in office procedure where he gently goes in and does some scraping—trigger finger gone, no pain. I hope your insurance can cover something like that because it would be a relief to stay on the meds as long as you can.

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@callalloo

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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Sorry I just saw this… stage 1, no nodes, grade 3 with lvi… high ki67. Lumpectomy.
I did chemo, rad, tamoxifen for 5 and now in AI for 4 years… I will be cancer free 10 years this October. Praise God🙏

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@lcr2017

Yes, I had hair loss; constantly wiping the shower and swiffering floors. But it sheds and comes in, sheds and comes in…I could actually feel the tiny hairs. When I finally got brave enough during Covid to go for a good haircut, the stylist actually asked me if I had had Covid because many of his clients lost hair due to Covid. I did not explain why…it also turned my gray hair to Snow White. I am lucky to have thick hair.
My husband has problems with his hands where he gets trigger finger. His hand surgeon has an in office procedure where he gently goes in and does some scraping—trigger finger gone, no pain. I hope your insurance can cover something like that because it would be a relief to stay on the meds as long as you can.

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Where do u live? Doc Name? I've had a trigger finger surgery - Lots of PT -
3 fingers have a trigger.
Also, hair loss!!
I'll never take anastrozole again.

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@chickie

Where do u live? Doc Name? I've had a trigger finger surgery - Lots of PT -
3 fingers have a trigger.
Also, hair loss!!
I'll never take anastrozole again.

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Can you please tell me how long after taking anastrozole you started to lose your hair? Any other debilitating problems?

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@chickie

Where do u live? Doc Name? I've had a trigger finger surgery - Lots of PT -
3 fingers have a trigger.
Also, hair loss!!
I'll never take anastrozole again.

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NJ. Dr Evan Fisher, Summit Medical, Montclair. He did 4 fingers. One was completely locked for 3 days over a long weekend. He fixed that one right in the office too.

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