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Debbie L. · 08-23-2009, 06:48 PM

Marcia, did you have your ER re-checked when you transferred care to Stanford? That's a borderline level and it could actually be negative, so that you could avoid enduring the side effects of a drug that has nothing to offer you.

Forgive me if I've asked this question of you before. I did look through your posts and don't see double-checking mentioned.

Unfortunately and upsettingly, ERPR levels are often inaccurate when done at local labs and if the results are borderline, that can be a crucial error. It doesn't matter if, for example, the error is between 60% positive and 80% positive. But when we get close to zero, it matters. I had mine redone at Baylor and both ER and PR were negative. Local lab had said 5% ER+ and for that I got two years of Arimidex. It's easy to get a second opinion pathology from Baylor, using your slides and tumor blocks from the initial surgery or biopsy. But if you're now receiving care at Stanford, they should be able to do it there. Or maybe they already have?

If it's reliable report of 5% ER+, then it's muddier. Current thinking is that it's possible that any degree of ER positivity could benefit from endocrine treatment. However, at least with Tamoxifen (and it's probably the same for AI's), response to endocrine therapy improves as ER levels rise. Some oncs will tell those will low ER+ pathology that it's worth trying the endocrine therapy but that if side effects are really troublesome, they would not push a woman with a low ER+ cancer to continue the endocrine therapy (because it probably offers her a small benefit).

What is Stanford telling you about how much benefit you can expect from Tamoxifen?

Debbie Laxague

08-23-2009, 06:48 PM	#5
Debbie L. Senior Member Join Date: Jul 2006 Posts: 463	Re: Tamoxifen for 5% ER? Marcia, did you have your ER re-checked when you transferred care to Stanford? That's a borderline level and it could actually be negative, so that you could avoid enduring the side effects of a drug that has nothing to offer you. Forgive me if I've asked this question of you before. I did look through your posts and don't see double-checking mentioned. Unfortunately and upsettingly, ERPR levels are often inaccurate when done at local labs and if the results are borderline, that can be a crucial error. It doesn't matter if, for example, the error is between 60% positive and 80% positive. But when we get close to zero, it matters. I had mine redone at Baylor and both ER and PR were negative. Local lab had said 5% ER+ and for that I got two years of Arimidex. It's easy to get a second opinion pathology from Baylor, using your slides and tumor blocks from the initial surgery or biopsy. But if you're now receiving care at Stanford, they should be able to do it there. Or maybe they already have? If it's reliable report of 5% ER+, then it's muddier. Current thinking is that it's possible that any degree of ER positivity could benefit from endocrine treatment. However, at least with Tamoxifen (and it's probably the same for AI's), response to endocrine therapy improves as ER levels rise. Some oncs will tell those will low ER+ pathology that it's worth trying the endocrine therapy but that if side effects are really troublesome, they would not push a woman with a low ER+ cancer to continue the endocrine therapy (because it probably offers her a small benefit). What is Stanford telling you about how much benefit you can expect from Tamoxifen? Debbie Laxague __________________ 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.