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Lobular Breast Cancer: Let's share and support each other

Breast Cancer | Last Active: 3 days ago | Replies (395)
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@lhwoz

Hello all -
QUESTIONS re: actual ER/PR "score" on Oncotype report:

I am ILC ER/PR+, HER2-. 55 yo. Have had lumpectomy and sentinel nodes removal and then re- excision. My tumor was 2.1 cm, and node had "rare isolated cell" bu MDs indicated technically Node Negative. My questions for all of you in the know today is the ER/PR+ "score" on your Oncotype report - and does anyone have any advice to address this:

I recently received my Oncotype score of 22. It was revised from 18% to 8% for the Distant Recurrence Risk at 9 Years. The interesting part is the "score" for the ER+/PR+. my score was 7.2 and 6.2 respectively, and based on a little research I have done this seems to be very close to the cutoffs of 6.5 & 5.5 that places me in the ER+/PR+ vs being labeled - in these categories? Does anyone have any thoughts or experience with this, or info from your Med Oncologist? Unfortunately I did not get to review report until after I met with her and so had not looked at it closely. I will follow up with there but thought I would put in a shout out to all of you!

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Replies to "Hello all - QUESTIONS re: actual ER/PR "score" on Oncotype report: I am ILC ER/PR+, HER2-...."
Sue Ellen Murrey | @semurrey | Mar 9, 2023

Hi gals -
My lumpectomy was 11/30/22, (2cm, ER+, PR+, Her2-), I'm 57 yrs, finished 19 radiation treatments end of January 2023 and started Letrozole Feb 8 so I've been on it a month and hanging in with some joint stiffness so far (although I know side effects more commonly present after 6 wks).

My oncotype was 14 so felt fortunate I could skip chemo but I have read that oncotype better suited for IDC as lobular not as common but my onco at Dana Farber used it to say I could skip chemo. I just checked the single gene scores which I think you are referring to and my are 10.4 ER+, 7.2 PR+, 9.0 Her2 -. To be honest I never really looked at these numbers and not sure their meaning - so I'd recommend talking to your doctor as I've found research on the internet very confusing for lobular in regards to oncotype testing.

I do have osteopenia and my onco said we would do another bone density in 2 yrs - I only take 2000mg vitamin D (live in New England), and try to get calcium through diet as have a hard time with calcium supplements . I've heard Glucosamine can be helpful but figured I'd hold off until for now. I have a follow up after 3 months on the Letrozole but no scans until a year which does make me a little nervous. I'll keep you posted on any side effects of the Letrozole but other than joint stiffness upon waking I'm hanging in - hope this helps!xoxo

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