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HER2+ Survey
Hello, Everyone!
Checking in to post this HER2+ survey being conducted through the University of Chicago. Please participate if you have MBC.
https://redcap.link/TREAT_HER2
I have been living with MBC since 2007 and stopped treatment in March 2020. I have been NED since 2008 (lung and brains mets). Further on stopping is because my brain met and one of my lung mets was mTNBC. So, on changing oncologists after 11 years, two individual oncologists recommended independently that I stop treatment because it appears that my pathology changed (roughly a 30% chance of that happening). A third opinion agreed.
I'm heavily involved in breast cancer advocacy, such that it's like a full-time job. Always praying that MBC will eventually become a chronic disease, and of course also cured. But I'll take chronic!
Much love,
Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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