How Many are doing 10 years on Aromatase Inhibitors
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I was ER+ PR+ HER2- (one lab had me positive), LVI , grade 3,but no nodes and Ki67 was 20% considered just over the line for high. My Oncotype, however, was 8.
I found Genomic Health, the company that does Oncotype Dx, very helpful. Ki67 is not the only measure of proliferation that they use, so their results will not match up with Ki67 necessarily. And 30% of grade 3's have low Oncotypes. Traditional pathology would have had me doing chemo, but the Oncotype indicated no.
I drove myself cracy reading about Luminal A and B while deciding on chemo. My oncologist told me I am Luminal A but when I did reading I wasn't so sure, with the grade 3, LVI and Ki67%. I didn't do chemo because of the low Oncotype.
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windshores - you are similar to me. My ki67 was 22%. I found an awesome power point that showed the breakdown and importance of the genes in the oncotypedx test, but I've lost it. Going to try to dig it up.
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http://www.stjames.ie/GPsHealthcareProfessionals/C...
Found it!!! I'll bet doctors are amazed at the stuff we BCO ladies/ gents dig up AND share!
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I am now on Femara for an additional 5 years. My doctor told me studies show too many recurrences after the pill is stopped at the 5th year. I gladly will take it for 5 more years. Me and chemo did not get along.
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I know I'm Luminal B because I'm Her2+ but my stats are kinda conflicting. I'm 90% ER/PR+, Her2+++, grade 3, 4cm tumor, Negative nodes and negative LVI. I didn't have my Ki67% tested because my (first) MO didn't think it was necessary. My tumor was large but it didn't go to my nodes. It was my understanding that being Her2+ meant your ER/PR+ %'s were usually lower. My current MO said in January that she didn't see me going beyond 5 years on an AI. Of course that was before the latest study came out. She told me she thought my recurrence risk was greatest in the first 3 years based on grade and Her2+ status. My risk beyond 5 years was as close to zero as I could get (again, based on grade and Her2+ status). I'm not sure I agree with that because I'm 90% ER/PR+. Which is more important? Grade or hormone + percentage? One would assume, maybe incorrectly, that being 90% ER/PR+ would mean my hormones play an important role in whether I recur or not. Whether that be 3, 5, 10, 15 or 20+ years down the road. It's all very confusing! To make it even more confusing, my first MO thought my recurrence risk was low. I don't want to continue beyond five years and yet I do. My side effects so far haven't been too bad. Of course we all know that can change overnight.
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Quinncat - back when I was dx in 2006 Oncotype testing was not allowed for patients with a positive node. I was automatically given chemo DD A/C and DD Taxol.
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Hopeful - you went to OHSU? I went there for my surgery and had my initial MO visits with Chui. I live further south, so did all my chemo closer to home, but my local MO had a fellowship at OHSU, so stays in touch with the players up there. The Nurse Coordinator for Naik (the BS) was the one that told me they don't use Ki67, but she is in surgery, not oncology. I have been wondering if Chui is still up there? My Ki67 came from a lab in a smaller town - maybe old school, though by being old school, they are newer school (accidentally), if you know what I mean.
SpecialK - thank you for the links!!! Very interesting.
cp418 Thanks! Would have been interesting
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I had an oncotype of 3 and a high mammaprint. I was 100 percent er and pr.
I don't know what to think
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I just started on Anastrozole 5 months ago and can't imagine being on it for 10 years! Has anyone had the Breast Cancer Index test? I have also read that breast conserving surgery withradiation recurrence peaked after 5 years.
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Quinn - I had surgery and pathology at St. V in Portland. My BS is at Legacy w/privileges at St. V. My 2nd opinion MO, Dr. Vuky, was at OHSU's NW Portland facilityand I liked her so much that I switched to her. she is also the local investigator of the clinical trial I'm on. She is one smart, compassionate MD. I'll ask her about Dr. Chui. Small world, isn't it?0
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This thread has been busy.
lisa2012 "What is luminal A and B? Should I find out what I am?"
lol most of us are still trying to thrash this question out.
mommato, I'm like you in that my tumor was large and no nodes as well. Just thought I'd throw some more potential confusion into the mix - what about where our tumor is was placed. Can't help thinking the distance from the axilla might make a difference?
Hopeful, doesn't look like the Mods have taken any notice but since this Luminal and B thing is so confusing I reckon some sort of dedicated space for it wouldn't go amiss. There's categories for just about everything else.0 -
morning all, I have been catching up and reading the Luminal info. I have a reference book I got when first diagnosed called 'Breast Cancer Survival Manual', by John Link. He explains Luminal as being part of a newer classification system, different from the old ductal vs lobular: Briefly, I will summarize the general info in each of the 4 categories he discusses. It is explained a little differently, so just adding it into our information soup, but please please keep in mind each case is unique, as will be treatment considerations.
Luminal A: strongly Er+ and Pr+, low grade, low ki67, look, act [well differentiated] and behave more like regular breast cells, so tend to remain in place and be smaller [<2cm], slower growing, unifocal, ductal, and mostly caught by mammograms, with excellent outcomes, and often only need limited treatment options [surgery and rads, not chemo] ....though always a risk they can mutate into luminal B
Luminal B: strong Er+ but Pr often weak, intermed grade, intermed ki67, formerly called intermediate ductal or infiltrating lobular, can be a mix of ductal and lobular or lobular only, often multi-focal, mammogram often underestimates size and satellites, and requires specialized treatment considerations - local control surgery and due to nature clean margins can be a challenge, and as greater propensity to spread chemo and rads more likely needed -- gene profiling can help determine that
Basal Type - Triple Negative: lack receptors for Er and Pr and Her2 -- often proliferative and fast growing, so very sensitive to chemo, with high Ki67, often in younger women, and present with a palpable mass -- receiving much research and treatment is evolving
Her 2+: overproduces Her 2 gene and is identified by presence of Her2 receptors [testing results are either negative, intermediate {requiring further testing} or positive {thus responsive to specialized treatment}, can be either Er+ or - and/or Pr+ or - which also influences treatment options, often fast growing, hi Ki67, and also more prevalent in younger women, tremendous progress in Her2 antibodies treatments added to chemo has greatly improved prognosis
So, a different way to classify from the older 2 cell type method: ductal can occur in any of the 4 above, lobular is only Luminal B
hope this helps, and have a great weekend everyone
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Quinn and Hopeful, I am also being treated in the Portland Metro area. My BS is Dr Aliabadi at Oregon Clinic in the Providence Cancer Center. I have been going to Compass Oncology for my rads. My MO is Dr. Look,and my RO is Dr, DeWette. I will start Arimidex on or around August 4, after rads are completed. I am on 6/16 WBI, with 4 boosts scheduled.
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F Godmother - it's interesting how many of us in the NW have turned up recently. I know women who are at Compass and they tend to really like their MDs. I hope that's the case for you, too.
You're more than 1/3 through your radiation; the rest should go quickly. (I did conventional fractions - 35 sessions, 7 weeks. It was a long, wearing summer.)0 -
Funny we all have our stats! I think my K167 was about 41, my oncotype was 31. (yes, yikes) Low ER (25%) PR and HR negative. Plus BRCA1. My tumor was .8 cm. Small. No nodes. So it sounds like i had a little bad boy tumor. Almost 4 yrs on Aromasin and as I said above it is finally not bothering me much, thank goodness. I bet my onc will say 10 yrs but I have another year to go before it's a question.
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Wow Lisa....I've removed my stats, but we have fairly close paths. My numbers a bit worse (onco and Ki67), though my ER might be better and I am brac2 . I was just a couple of months ahead of you with chemo.
As far as you PDX people - hello! I only went to OHSU for surgery (excuse me surgeries - BRCA2) and first consult with the head MO there. Dr. Chui - probably smart, but a bit of a misogynist - LOL. "My girls.....blah blah blah." I was so much in shock, having just heard my 39 oncoscore, I didn't care much, but my partner noted all of his faux pas after we left. I got my chemo down in Medford.
Phobe I thought I'd read every description of luminal B out there, but what you posted (the italicized part):
Luminal B: strong Er+ but Pr often weak, intermed grade, intermed ki67, formerly called intermediate ductal or infiltrating lobular, can be a mix of ductal and lobular or lobular only, often multi-focal, mammogram often underestimates size and satellites, and requires specialized treatment considerations - local control surgery and due to nature clean margins can be a challenge, and as greater propensity to spread chemo and rads more likely needed -- gene profiling can help determine that
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QuinnCat - Whoa! That would have put me off, too. And yes - hearing "39" would have put me in shock, too.
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yes, all the oncologists say 10 years in NY
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Well some of us just don't fit the picture. I am clearly Luminal B by any of the definitions (and even had mixed ductal and lobular) but had a low Oncotype. I do fear, as someone else said, that I am in a Luminal B group that accounts for the recurrence rate among a few low Oncotypes. But not going to think about it too much until I have to.
Farmer Lucy, I am glad you posted that link. If anyone looks at it, they will see that ki67% is just one of 5 proliferation markers, and there are invasion markers as well. I think the focus by some on grade and Ki67% is to establish a sort of poor man's Oncotype. But traditional pathology was used very recently so it is hard to give up that "everything but the kitchen sink" mentality.
I have never been sure if the low Oncotype really just means chemo wouldn't have worked on me.
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http://www.breastcancer.org/research-news/oncotype-dx-predicts-late-distant-recurrence
I saw this about oncotype DX maybe predicting who can stop at five years.
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I saw this too and am wondering if the ESR1 predictor they are referring to is listed in the report provided to those of us who got the Onco test. I'm unsure if my test has this result. It was done almost 6 years ago. Does anyone know how this relates to existing tests? Thanks!
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I understood the ESR1 information to be the number given for ER+. One of three with PR+ and HER2+ the other two. Am I reading this correctly?
All this recent research is finally digging up the information we need to find out who may get mets 5-15 years down the line. We need it and more.
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So Doxie are you saying I have the trifecta for recurrence?
Seriously my MO does consider me high risk for recurrence but my understanding is the HER2+ part is more the first 5 years. She seems to be more concerned with the hormone positive diagnosis now that it's been over 5 years.0 -
Thanks Doxie, I think you're right. And now I get why my MO wants me on the letrozole for 10 years.
I'm also interested in the SOLE study which says in a nutshell: Questions remain about the optimal duration and best schedule of AIs in the extended adjuvant setting. This trial tests the hypotheses that introducing 3-month treatment free intervals during the course of five years of extended adjuvant letrozole will improve disease free survival. This hypothesis is based on the theoretical principle that letrozole withdrawal for 3 months will permit some estrogenic stimulation which makes residual resistant disease susceptible to letrozole reintroduction.
This trial is for patients who have had 4-6 years prior adjuvant therapy. A small trial completed already that showed the intermittent had as good as or better results as continuous treatment. Full results won't be available for a few more years but it makes a lot of sense to me. I'm thinking of 5 years letrozole (after already doing 3 years tamoxifen) and then trying this intermittent for another 5 years.
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Here's the abstract which gives a little more info. Of course, I can't find my oncotype DX report from 5 years ago, but I'm wondering if this 9.1 that I bolded below is related to the numbers on the report. I remember my number being very high, probably in the 9s for ER+ and PR+ both. This would seem to indicate I could stop at 5 years. Go figure, I already had a local recurrence and would be petrified to stop at 5 years.
PURPOSE:
We determined the utility of the 21-Gene Recurrence Score (RS) in predicting late (> 5 years) distant recurrence (LDR) in stage I and II breast cancer within high and low-ESR1-expressing groups.
PATIENTS AND METHODS:
RS was assessed in chemotherapy/tamoxifen-treated, estrogen receptor (ER) -positive, node-positive National Surgical Adjuvant Breast and Bowel Project B-28 patients and tamoxifen-treated, ER-positive, node-negative B-14 patients. The association of the RS with risk of distant recurrence (DR) 0 to 5 years and those at risk > 5 years was assessed. An ESR1 expression cut point was optimized in B-28 and tested in B-14.
RESULTS:
Median follow-up was 11.2 years for B-28 and 13.9 years for B-14. Of 1,065 B-28 patients, 36% had low (< 18), 34% intermediate (18 to 30), and 30% high (≥ 31) RS. Of 668 B-14 patients, 51% had low, 22% intermediate, and 27% high RS. Median ESR1 expression by reverse transcriptase polymerase chain reaction was: B-28, 9.7 normalized expression cycle threshold units (CT) and B-14, 10.7 CT. In B-28, RS was associated with DR 0 to 5 years (log-rank P < .001) and > 5 to 10 years (log-rank P = .02) regardless of ESR1 expression. An ESR1 expressioncut point of 9.1 CT was identified in B-28. It was validated in B-14 patients for whom the RS was associated with DR in years 5 to 15: 6.8% (95% CI, 4.4% to 10.6%) versus 11.2% (95% CI, 6.2% to 19.9%) versus 16.4% (95% CI, 10.2% to 25.7%) for RS < 18, RS 18 to 30, and RS ≥ 31, respectively (log-rank P = .01).
CONCLUSION:
For LDR, RS is strongly prognostic in patients with higher quantitative ESR1. Risk of LDR is relatively low for patients with low RS. These results suggest the value of extended tamoxifen therapy merits evaluation in patients with intermediate and high RS with higher ESR1expression at initial diagnosis.
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lago,
We know you are triple special!
Your ER+ is 30%? or am I misremembering? By reviewing your ER, PR, and HER2 +++ numbers, your RS would likely be very high. But as per this abstract for those who completed chemo, the low ER+ % would lower the ER+ related long term recurrence rate. You might fall into the counterintuitive area of lower risk for recurrence.
My ER+ is 95% and well above the Oncotype cut off number. Though my RS was 30, it looks like I may be at more risk of later mets because of the very high ER+ than those with higher RS scores. I always wondered if ER made a difference for distant recurrence or it if was more level of PR, HER2 and/or Ki67. Some of all, but not necessarily as we might think.
I'd almost decided to not continue AIs past 5 years because of fatigue and bone health. Now I don't know with this information. Have until April to decide. Adding this to concern over a cracked bone in my foot and now a cracked rib from coughing and what this indicates for bone health even though I don't have osteoporosis.
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I am confused about the study above. Do the results only apply to those who have ESR1 9.1 and above? My ER score from the OncotypeDx test was 8.9. If it is an equivalent of ESR1, is my DR lower than in the B-14 study or is the study not applicable to me?
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I'm also confused. I am very familiar with RT-QPCR, which is the molecular technique used in this assay, and the lower the CT, the higher the expression (so a cutoff of 9.1 means that anything over 9.1 CTs is lower expression). The values on the oncotype report show that as the number increases, the expression is also higher, and values lower than 6.5 are negative for ER. So when they say "higher quantitate ESR1" are they referring to higher expression or higher CT values? I will email the lead author on this study and see if I can get a clarification.0
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Thank you, grandma3X!
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Doxie you are correct. 30% ER 5%PR. When I talked to my MO about the low ER she said it doesn't work that way… granted never told me how it did work. Remember that 30% of a 5.5cm tumor is a lot more ER+ cells than a 30% 2cm tumor. It's my tumor size that worries her.
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