Posted on: Sep 17, 2017 12:28PM
Anyone else in this same boat? Would love input or sharing your experience. Feeling a little alone in this boat!
Posts 391 - 402 (402 total)
Sep 4, 2019 08:10PM Murfy wrote:
This 2019 article (link attached) may explain WHY I have such a high oncotype score, high Ki-67, and grade 3 tumor (all hallmarks of being triple negative), despite having very high ER levels. I had already discovered that I have 3 mutations in my FGFR2 gene, all 3 of which predispose to breast cancer. According to this new article, these mutations render ER useless (at the nuclear level). As PR depends on the presence of functioning ER, this could also explain why I am PR-. So am I essentially triple negative?
Sep 13, 2019 12:05AM TJF wrote:
Also feeling a little alone and concerned, my original report was DCIS and now it's also IDC 30% ER+ PR- and HER-2 sill pending, they have sent my pathology off for Oncotype genetic testing. Anyone eslse have Oncotype testing done with similar dx?
Sep 13, 2019 12:16AM Legomaster225 wrote:
TJF, I just responded to your another post. My oncotype showed 27% ER+, 10% PR+, HER2 was negative. My Oncotype score was 39. I did the chemo. The positive side is that that it responded very well to chemo. From what I understand the PR- (or very low in my case) tends to have a higher Oncotype score but there are many factors involved. Hopefully, you will get your results back quickly so you can make informed decisions. Waiting is so hard. Praying for the best possible outcome for you.
Sep 13, 2019 10:43AM PatsyKB wrote:
Yup. My diagnosis last year was IDC (with just a few DCIS cells), ER+(95%), PR-(0%), HR2-. I had the Oncotype testing done and it was invaluable in providing an aid in making the chemo/no chemo decision. As it happened, the TailoRx study of intermediate-Oncotype-scores of 11-25 had JUST some out. My Oncotype was 24 (at the very top of the Intermediate range studied). I could either have chemo or not; I had a lot to weigh and my Medical Oncologist helped a great deal in laying out what I should be considering, without telling me what to do. Risks vs benefits plus the very positive benefit of the AI I was going to be on (as opposed to the Tamoxifen which is assumed in the Oncotype data). Ultimately, I did NOT do chemo. (I would have had barely a 3% benefit with chemo + AI. Anyway, that's my story - EVERYONE IS DIFFERENT. Read up on how to read the Oncotype report you'll get. Read up on the TailoRx 2018 study (it's really an update on the 2015) - Here's one link to a somewhat simplified piece - bit.ly/TailoRxResults. Keep us posted - and keep asking questions. You're definitely not alone here!
Sep 15, 2019 11:26AM JudyO wrote:
Hi All....Just wanted to send a little hope to some of you. I am over 11 years out with ILC ER + PR - HER2 -. My tumor was 2.2 cm 7 positive nodes, grade 1. Chemo AC and T..25 rads, and 10 years of arimidex. I worry often about a recurrence but want all of you to know that if you can enjoy each day. I wish I hadn’t worried all these 11 years and had enjoyed/treasured them. I have no guarantee about tomorrow but know making memories and enjoying the time God gave me is what life should be about
Sep 15, 2019 06:40PM wintersocks wrote:
Could someone please explain why we might be considered triple negative as we are er + so how can that be? I am 100% er.
Sep 15, 2019 06:46PM IllinoisNancy wrote:
Hi All...I am 13 years out with PILC, oncotype 9 and living life to the fullest. Technically, I'm Stage 4 because of skin mets but the Ibrance and Femara is keeping me alive and well. Good luck ladies and remember to enjoy everyday:)
Sep 15, 2019 10:51PM moth wrote:
wintersocks, are you speaking about Murfy's post from Sep 4?
so, I think the explanation is that as we get better at analyzing breast cancers, we're finding out that the categories of ER, PR and HER are very broad and that within those categories, there are many subtypes of cancer. (OncotypeDX is an example of a test that goes much further than just looking at hormone expression and looking at actual genetic markers of the tumor to see what is making it replicate and succeed.)
What the article Murfy is posting suggests is that in some cases, someone who is ER+ but also has a bunch of genetic variations in their cancer, the estrogen receptors are not really working the way traditional ER+ cells do, and their cancer cells function more as triple negative.
Sep 15, 2019 11:17PM Meow13 wrote:
Wintersocks, some really good news is statistically being 7 years out from er+ pr- you are in good numbers to never see it again. Almost all recurrences hapoen in the first 5 years for both triple negative and er + pr-. Not to say it can't come back but it dies not look probable.
Sep 16, 2019 06:59PM wintersocks wrote:
Yes I did it read it here and it sounds like Murphy's post I was thinking of. I see - that having the 'rogue+' er + could make the cancer be more like triple neg? I wonder if we know if ours is that sort? I don't think we have the oncotype dx test here in the UK., perhaps that's the only way to know? Thanks for the explanation - it helps in understanding the more unusual dx we have,
wow! that's heartening to hear, however my onc when I saw him last about 2 years ago said I would remain at 'significant risk of dying from your disease' and added that when Femera is stopped the cancer (this type) usually returns. I am wondering because it was a large tumour. Sometimes it's so difficult to know what to think.