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Sep 18, 2020 01:33PM
Sep 18, 2020 06:53PM
I'm a TNBC girl so not offering personal experience but chiming is because an onc I follow online was critiquing a recent study presented at ESMO (Opdam " avoid systemic overtreatment of post meno bc pts with low mammaprint scores" positing endocrine tx for only 3 years -but it's a small study & v little long data past 10 yrs) & I recently re-read the big 2017 study about ongoing 20+ yrs risk for ER+ (aka the long tail study) *
I've been thinking about Pinktober & 'survivor stories' & my sense of early stage ER+ pts is that many do not get enough information about the difference between recurrence scores, overall baseline risk (which at best returns to close to general population's ie 9-11%, or roughly 1 in 10 but often is considered to be around double of general population ie ~20%, because having had cancer once demonstrates your body has a weakness in identifying and killing of a mutation. Remember our cells make replication errors all the time & more as we age... the cells just self destruct or get killed by the immune system. Cancer is a failure of many control mechanisms. If you had a failure once, there's a real risk that it will fail again).
And furthermore, my general sense is that many people are told they're "cured". Some numbers are given to them but little context about what is personal risk, what is general population risk, & also what timelines are being considered. I'm even seeing an erosion of 5 year survival rates being a big topic among pts because it sort of seems *to some* that it's a given that they'll be around for 20+ years! They're not even thinking 5 years. Oncologists otoh often get excited about studies showing additional 3 months of life so their time scales are also subject to warping; I think MOs often aren't thinking years or forever, whereas patients are....
SO... the long tail study big kicker "The risk of distant recurrence was strongly correlated with the original TN status, with risks ranging from 10 to 41%, depending on TN status and tumor grade."
& let's just note here because even this sometimes gets lost for early stage pts: distant = metastatic = stage 4 = no cure. So if you're in a high risk category, and stop endocrine treatment, there are significant risk of a metastatic fatal recurrence at some point in the next 20 years. Obviously, the younger you are, the more of an issue this will be for you.
However, a 2019 update at SABC the authors presented data on pts diagnosed after 2000, & found that the recurrence rates are dropping. "The risk of DR at 20 years after diagnosis for women with node-negative ER+ early stage breast cancer, who discontinue endocrine therapy at 5 years is likely to be about a third lower now than in our previous report. However, long-term follow-up of patients diagnosed more recently is required to accurately characterize long-term recurrence risks." https://cancerres.aacrjournals.org/content/80/4_Su...
Anyway, my bottom line is that when making these decisions, it requires a lot of thinking about risks, absolute, relative, personal & population. I think this isn't a short MO appointment. This is a LONG appointment with questions and hopefully an MO who can explain and personalize all these numbers & do a crash course in stats if necessary.
*Pan H, Gray R, Braybrooke J, Davies C, Taylor C, McGale P, et al. 20-year risks of breast-Cancer recurrence after stopping endocrine therapy at 5 years. N Engl J Med. 2017;377:1836-46. (clickable link to free article in 1st para above)
Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr....
12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC)
12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel
2/13/2018 AC + T (Taxol)
8/12/2018 Whole-breast: Breast
2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2-
3/17/2020 Taxol (paclitaxel)
3/18/2020 Tecentriq (atezolizumab)