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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Thank you for the very good information. I should have proofread my post. The correct number is 0.3mm and not 0.3m.. Even so I have the answer to my question, so thank you.

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Profile picture for callalloo @callalloo

Good. I was referring to any genetic test but the test I had was the OncotypeDX. The customer service reps are great and, when I had a question they couldn't be absolutely sure about, I was able to talk to someone in the science side of the firm. He answered a question, about which both my o cologist and ontological radiologist were flat out incorrect (sic) and put the answer in writing. I took his email to them and the vreast cancer surgeon because they were, well wrong, and needed to advise patients correctly. [My PCP congratulated me for persistence in double-checking, as did a consulting endocrinologist, and I had the letter entered into my medical file.]

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Do you mind telling what they were wrong about?

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Profile picture for gillooly @gillooly

Does anyone know what is a “safe” margin? From my pathology report “my invasive carcinoma distance is 0.3 cm from the closet margin”. In addition it reads “Specify closest margin: Deep”. 0.23 seems vey slim. Thanks

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I don't know if this helps but my breast cancer surgeon told me the aim is 1.5-2mm of negative margins. I personally would have preferred wider margins and deal with the cosmetics later if necessary. But my post-op biopsy showed clean margins of 1.5mm and two oncologists were happy with it. So your 0.3m looks even better. [I'm phobic about too-narrow margins after a friend's new husband died from skin cancer and M.D. Anderson concluded the original surgeon from a different facility removed a few millimeters too little. So I totally get your question.]

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Profile picture for jaynep @jaynep

Are you referring to genetic testing or the oncotype dx test? We’re waiting for the oncotype test results to come back. Thanks for your reply. I appreciate it.

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Good. I was referring to any genetic test but the test I had was the OncotypeDX. The customer service reps are great and, when I had a question they couldn't be absolutely sure about, I was able to talk to someone in the science side of the firm. He answered a question, about which both my o cologist and ontological radiologist were flat out incorrect (sic) and put the answer in writing. I took his email to them and the vreast cancer surgeon because they were, well wrong, and needed to advise patients correctly. [My PCP congratulated me for persistence in double-checking, as did a consulting endocrinologist, and I had the letter entered into my medical file.]

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Profile picture for pbnew @pbnew

How long have you been on Verzenio? What kind of side effects? Thanks.

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3 months. I had diarrhea at the beginning -which is very common but it went away after about a month. I space them out by 1 hour, I think that helped.

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Profile picture for eku @eku

@pbnew I have MBC (mets to bones), no surgery. I am on anastrozole + Verzenio.

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How long have you been on Verzenio? What kind of side effects? Thanks.

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Profile picture for pbnew @pbnew

These are tough decisions for everyone. Are there any folks in this thread who are taking an aromatase inhibitor as the only form of medical treatment with or without surgery? I’m on Letrozole and Ribociclib. I want todump Rebociclib . I’ve had no surgery.

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@pbnew I have MBC (mets to bones), no surgery. I am on anastrozole + Verzenio.

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Profile picture for windyshores @windyshores

@pbnew are you stage 4? Kisqali (ribocicib) is usually used for metastatic cancer.

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Yes metastasis to some bones.

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Profile picture for pbnew @pbnew

These are tough decisions for everyone. Are there any folks in this thread who are taking an aromatase inhibitor as the only form of medical treatment with or without surgery? I’m on Letrozole and Ribociclib. I want todump Rebociclib . I’ve had no surgery.

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@pbnew are you stage 4? Kisqali (ribocicib) is usually used for metastatic cancer.

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Profile picture for callalloo @callalloo

Did you by any chance have genetic testing that could give you an idea of risk of likely recurrence? A post-surgical biopsy yields the information as to whether there were clean, sufficiently-wide margins. If you weren't given a copy, you can ask for it. With a lumpectomy that recent, they can likely still submit the tissue for testing. Mine was submitted by my oncologist and I didn't see him until 8 days after surgery.

I'd probably consider getting a second opinion entirely from a different oncologist.. And, if I needed more surgery, get a second opinion on that too.

As to the post-surgery adjuvant anti-hormone drugs, many people have few side effects and tolerate them. With the caveat that the aromatase inhibitors will effect the rate of bone loss. And you might want to pay special attention to that and have a baseline DEXASCAN before starting them. They might have no negative effect on the spinal fusion.

I wish that more patients with breast cancer were offered the genetic testing. Size, location and stage of tumor are data points. Adding the data derived from an analysis of that unique person's genes is a very valuable data point as well. It helped my oncologist and endocrinologist (and me) feel OK with my decisions re: radiation and drugs.

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Are you referring to genetic testing or the oncotype dx test? We’re waiting for the oncotype test results to come back. Thanks for your reply. I appreciate it.

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