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Debbie L. · 06-21-2015, 07:29 AM

Pat, I don't have any information to answer your (excellent) specific question about benefit from endocrine tx for very-low ER+ cancers. And as your providers say, I doubt we really know.

Have you thought about getting a second opinion at this time? Not just a consult but also a second opinion pathology review to confirm (or not) the actual ER status of the recurrence? You would want to do this, if possible, at an NCI-designated Comprehensive Cancer Center. Sometimes, you can just send your tissue blocks and do the rest (discussion) remotely. I did this with mine, sending them to Baylor where they did the Allred score (see signature). If you google "Allred Score", you'll can get information on that, and about its ability to sort out the "low" ER+ categories into clearly ER+ or ER-. Interestingly much of the research seems to be from India/Pakistan, although the test was developed by Craig Allred when he was at Baylor. Another thought might be to do an Oncotype DX and see what it thinks about the ER?

If you tried the AI and found it too troublesome to continue, it does seem that most of the SEs (except bone density decreases) are reversible upon stopping. I'm not certain, but I think issues are like deteriorating hips and knees are separate from osteoporosis issues (but of course, both can happen).

Good luck, and keep us posted about what you do, and what you decide, ok?

Debbie Laxague

06-21-2015, 07:29 AM	#2
Debbie L. Senior Member Join Date: Jul 2006 Posts: 463	Re: Question about AIs Pat, I don't have any information to answer your (excellent) specific question about benefit from endocrine tx for very-low ER+ cancers. And as your providers say, I doubt we really know. Have you thought about getting a second opinion at this time? Not just a consult but also a second opinion pathology review to confirm (or not) the actual ER status of the recurrence? You would want to do this, if possible, at an NCI-designated Comprehensive Cancer Center. Sometimes, you can just send your tissue blocks and do the rest (discussion) remotely. I did this with mine, sending them to Baylor where they did the Allred score (see signature). If you google "Allred Score", you'll can get information on that, and about its ability to sort out the "low" ER+ categories into clearly ER+ or ER-. Interestingly much of the research seems to be from India/Pakistan, although the test was developed by Craig Allred when he was at Baylor. Another thought might be to do an Oncotype DX and see what it thinks about the ER? If you tried the AI and found it too troublesome to continue, it does seem that most of the SEs (except bone density decreases) are reversible upon stopping. I'm not certain, but I think issues are like deteriorating hips and knees are separate from osteoporosis issues (but of course, both can happen). Good luck, and keep us posted about what you do, and what you decide, ok? 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.