Genetic Shift

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CathleenP
CathleenP Member Posts: 61
edited June 2014 in Triple-Negative Breast Cancer

How many of you have experienced a diagnosis shift from E+ to Triple Negative? This just happened to me, and has thrown my E+ world with all its hormonal treatment options into a free fall. How did your onc break the news to you and how have you been treated?

Thank you for any insights!

Cathleen

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  • tibet
    tibet Member Posts: 545
    edited March 2010

    Cathleen

    Are you BRCA tested? I actually never head this kind of shift. What I heard or read on this board is that some ER+ women get a second primary that is TN. Were you dx at stage IV back in 04 with ER+?

    What does your onc say? Has he seen this before?

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  • CathleenP
    CathleenP Member Posts: 61
    edited March 2010

    Thank you for your response. It's all a bit confusing to me. I attended a workshop recently which did discuss that these hormonal-sensitivity shifts have been recently discovered, and have made treatments particularly challenging. When I was first diagnosed with breast cancer in 2004, I was staged at II as E+/P+. I went through the gamut of mast, recon, chemo and radiation, thinking the BC was confined to the breast area.  I went on tamox for 4 years, and then switched to femara. I was restaged as E+ IV  last spring, when the scans showed mets to ovaries, pelvis, spine and renal area. I was petrified. I changed treatment from femara to faslodex and zometa, which stabilized the bone lesion growth but did not arrest the other tumors. At that point, I requested a biopsy of the renal growth--the biopsy revealed that the cancer was linked to the primary breast cancer (consistent with my original diag of lobular) but this time it was triple negative. Is it possible that I am some kind of hybrid--both E+ and triple negative? I don't know. But, my onc is now treating me for TN because the renal tumor is a bit out of control.

     I haven't seen a similar posting on these boards, so it's unsettling.

     Thanks for sharing,

    Cathleen

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited March 2010

    My onc has told me that BC can change.  She said that it is more common for positives to change to negative, but quite rare for a TN to change to a positive.

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  • mec2450
    mec2450 Member Posts: 29
    edited March 2010

    cathleen,

     my wife went from slight er+ and her2++ to triple negative. onc says it is happening more often as women continually treat bc with chemo over long periods of time. we have been getting regular weekly or every 3 weeks treatment for 5 years after a 3 year period of NED post original diagnosis.

     so i am not suprised to see your post....

     right now we are on doxil every 3 weeks.

     good luck to you,

    mike

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  • CathleenP
    CathleenP Member Posts: 61
    edited April 2010

    Hi Mike,

     Thank you so much for  your post! I was thinking that my case was too rare to find any similar experiences out there. You and your wife have certainly taken treatments to their far out edges. I am amazed by your strength and support of each other. I guess surgery is out of the question on the lung tumor? when I had the biopsy on the renal tumor, they actually tried to remove the whole tumor, but were unsuccessful. I'm afraid that such interventions let loose the "seeds" of cancer into the blood system, causing more trouble. But, then, how would we have ever discovered the mutation? Let me know how the latest pathology report reads. I wish you both a beautiful spring.

    Cathleen

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