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Re: How many progress to Stage IV?
I agree with everyone. How can we measure success (or failure) if we're not tracking recurrences? It goes completely against logic. Maybe it's a hold-over from the days when the time between recurrence/death was short enough that it seemed irrelevant. But those days are LONG gone, thank goodness.
On NBCCs facebook page today, they express the same concerns: https://www.facebook.com/StopBreastC...52223448188266
I'm going to ask there (NBCC's facebook page) what we as individuals can do to encourage SEER to change policy and begin collecting this information, and I will post here if I find out anything.
Debbie Laxague
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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