Occult bc ER low (5%) HER2 neg treated as TNBC
I was diagnosed May 26, 2026 with breast cancer after a lymph node was biopsied after routine MRI(I have had LCIS since 2011.) further test and biomarkers show no further metastatic cancer and the breast is the source. No tumor found, so they are calling it TNBC. My Ki67 is low, 11-15%. I feel like I’m the only one dealing with this type of diagnosis and I’m having a hard time finding much information about this.
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Welcome to the occult club but sorry you had to join. We’re so rare that not much is known. My MO has been pretty aggressive treating me with Verzenio and letrozole after radiation and after lumpectomy for a papilloma. I wish I had more information too.
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I was diagnosed occult in Nov 2024. Her2+, estrogen +.
Two swollen lymph nodes in left armpit. They lit up on MRI. No sign of it in breasts. Annual mammograms showed nothing.
Treated with 6 rounds of TCHP and had a pathologically complete response (no sign of active cancer in breasts or lymph nodes).Double mastectomy and pathology after surgery still showed no sign of it in breasts. I had always been told that I had extremely dense breasts. After chemo was on Phesgo and Letrazole.
9 months later had recurrence in brain (her2+ , ER+.) small tumor removed surgically. Have been on Enhertu and herceptin for past 5 mos and feeling good. I’ll continue to have brain MRIs and CTs of chest/abdomen/pelvis to monitor.
We are fortunate to have a lot of treatments available to us! I didn’t get too concerned about the occult status, just focused on treatment and doing great now!
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