How Many are doing 10 years on Aromatase Inhibitors
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Specialk, thanks for the link. The LuminalB question has always puzzled me and the link didn't really make it clear. They've said "tends to be" in making their distinctions between what falls into what category. They've said node positive "tends to be" LB. There doesn't seem to be anything about PR Negative.
Doxie all I know in my path is PR neg, so not sure of the percentage.
BTW, Im still rolling this 10year question around. Will keep watching this thread. I was told from higher up that I'd be going off it next year, but my Doc has been great and will find a way to keep me on. I'm doing quite well so far on Arimidex, but about 4 months in whoaaa, felt like 100yrs old. Exercise (walking) really helped me. I don't suffer as much joint stiffness now.0 -
And Musical, your tumor almost exactly like mine, though PR IHC was 5% and borderline non-existent on Oncotyping. Ki67 60% Whenever I see studies lumping Stages 1 to 3 together (for ER+) and see numbers like 95%, or even just Stage 1, no node, 95% survival, I always wonder if the 5% all come from the luminal B category.
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Presently been posting on 2 threads about this Luminal B. The other is on the stage1 board.
Topic: Luminal A vs. Luminal B stage 1 BC
MsPharoah has mentioned the ki67 test which I didn't have and I have no idea if it could be done years out. Also I had no oncotype testing so I'm back to the "is what it is" mode : |.
Kbeee - yes, would be nice to know more about this.0 -
Musical - NancyHB on these boards got her tumor tested for Ki67 years later. She was dx'd in 2011 and had a local recurrence this year (also Luminal
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the Luminal B thing is frustrating. Most places use low PR, high Ki67; this is what's used in most research studies, etc. then there are places like Mayo that say you have to be HER2 positive to be luminal B
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Exactly Kbeee it is frustrating. I would have thought there was something definite by now. One thing I've noticed, (might be just me) is there seems to be a lot more people with + - - on this board than there used to be.
Quinncat that's interesting! thanks for that. Convincing my team to do anything might be mission impossible from a health system that is free but isnt free.0 -
My understanding is a triple pos, or ER+, Her2+ is luminal B, independent of PR status, but a ER+, Her2- with a high Ki67 can also be luminal B, independent of PR status
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And my understanding it is ER+ with low to no PR and high Ki67 (>12%). Her2+ or Her2-.
I am Her2 negative. My doctor told me I am Luminal B.
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Quinncat I never even knew there was such a thing as LuminalA&B til I was looking in on this board some years ago. There were a couple of threads that mentioned it but cant remember what they were called or where they were.0
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SpecialK I can see how you can say that from that link, but who is the most authoritative on this? I'm not from the US.0
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I misread what you said Special K. Didn't know that triple positive would also be considered Luminal B??? I actually thought all Her2+ were in a category all by themselves (no matter the PR status). I'll have to reread your link.
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musical - this is an interesting and informative link, from 2011/2012 time period when the subtype designation was first coming to light.
http://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-5-376
And some info from NIH:
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Thanks SpecialK, I've made some comments over on the Stage1 thread. I've read your 2 links.0
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"My understanding is a triple pos, or ER+, Her2+ is luminal B, independent of PR status, but a ER+, Her2- with a high Ki67 can also be luminal B, independent of PR status"
^ my understanding as well
and if you are HER2+ status it means HER2+ but no hormone positive according to the Komen link
Finally I was told that 5% PR is considered positive (although barely. Told 3% is considered negative)
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More Luminal B cancers have positive node(s) too.
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Does anyone else think that it would be helpful to have a topic designated for Luminal-Type breast cancers, or even for Luminal B specifically?
There's a lot of useful discussion here that risks being overlooked by those simply going by the title of this thread.
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cp418 80% of tumors over 5cm that are HER2+ have node invasion. I was one of the 20 in 100 that did not. I'm also Luminal B.
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@ Hopeful - Yes I agree. At the moment I can't think where a thread would go, (need my first cup of coffee) so I'm wondering about a dedicated forum. Not sure. I'll post a request for it (down the bottom) and see what the Mods say.0
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lago (hope you are not quoting me--my brain does not work well since chemo!)
"but a ER+, Her2- with a high Ki67 can also be luminal B, independent of PR status"
I thought ER+ with Her2 neg and Ki67 gt 12% had to be PR negative or very low PR to be luminal B, so the "independent of PR status" would not agree with my knowledge of PR status. What is considered low PR via IHC and or oncotyping has never been explained to me. Mine was 5% and barely positive on oncotyping but you are saying one could be 100% PR (and ER pos and Her2 neg) and a high Ki67 alone would make one luminal B?
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Quoting special K.
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QuinnCat - This is my pathology 100% ER+, 100% PR+, HER2 neg, Ki67 score of 20 and 1/18 nodes positive. Tumor size was 1.8cm where the center was DCIS 0.5cm. My understanding is that I am Luminal B.
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http://www.onclive.com/peer-exchange/advanced-brea...
Interesting discussion, if for no other reason to demonstrate the point "we are waiting for the data." The title is misleading, but that's how I found this little diddy
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cp418 given your Ki67 score it makes sense that your are luminal B
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Lol!, and I was quoting the study, but my general understanding prior to that was that the qualifier for Luminal B in a Her2- patient was not dpendent on hormonal receptor percentages, but rather the Ki67%. What also muddies the waters is that some do not have Ki67% testing done, so don't have the info that may separate them from the ER+/PR+/Her2- patients who are classified as Luminal A, or have oncologists that discount the possible importance of Ki67 and subtype, and don't take it into consideration when proposing treatment.
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SpecialK - I see many say on BCO "I never got Ki67." Ki67 is on of the 4 major components of Oncotyping, so one might assume a high oncoscore could indicate a high Ki67, especially if ER+ is not too low (ER and PR being inversely proportional to oncoscore). As I said before, I know someone who had their Ki67 done long after chemo (somewhat out of frustration). As I recall, it's a matter of looking at a slide and one of the reasons not often reported, very much a judgement call, to the point, 3 different pathologists can come up with 3 very different numbers, though hopefully, not so different one can't get one of two classifications, "high" and "low."
My MOs used only my oncoscore (39) to determine my chemo regime. At OHSU, an NCI center, they won't even do Ki67 (my biopsy path done elsewhere). I did get a bit of personalized medicine for my BRCA2 status though - 6 shots of carbo at the end.
cp418 - interesting numbers. Very curious - what was your oncoscore?
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Quinn - I had Ki67 included on my initial biopsy path report, and mine was very high. My BS routinely asks to have done, and he was formerly the head of surgical oncology at the only NCI center in FL, now practicing privately. It is always interesting looking at the differences in philosophy per physician or facility, and unfortunately when initially choosing a team there are some questions that go unasked about methods which leave people frustrated after the fact. I feel fortunate that my BS believes more is more. I did not have Oncotype Dx done as my biopsy sample indicated I was Her2+, but did have a Mammaprint done with a high recurrence score. BCI testing was done recently by my MO and it is consistent, giving a high recurrence score off my original tumor sample. I was aware that Ki67 was included in Oncotype scoring, but it that number broken out on the report anywhere? I looked at some sample reports online and did not see it specifically, but I could have overlooked it.
I am a Carboplatin sister with you - had six also as part of my cocktail - not fun, but hopefully effective for both of us. It is interesting that there is some chatter now about removing it from the TCH regimen for Her2+ due to thoughts that it is not offering enough benefit, but it is being added to AC-T for some TN patients.
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No, Ki67 not explicitly stated on Oncotype report. I just know it is one of the 4 major factors that goes into scoring. Part of the problem, at least when I had my onco test in 2012, it's one big black box. They give some index type numbers for ER and PR and might state something about Her2+ (not sure about the latter) and then one's recurrence score. Frustrating, because I know there are many genes they are looking at to compile that score.
I had not heard about TN's getting Carboplatin added to AC-T. I need to go investigate! That was my regime; DD AC-T, then 6 weekly Carboplatins, but Carboplatin was not protocol for me. The MO at OHSU gave it to all of his BRCA patients, at least in 2012. As he said at the time, "he was going off the reservation." Platins supposedly work on the type of cancers caused by the BRCA gene - DNA repair, etc... Otherwise, I just got the basic chemo for an aggressive ER+PR+ Her2- BC. I actually found the Carboplatin a breeze compared to Taxol and AC (in that order). Taxol did me in (neuropathy, hair loss, pain).
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Quinn - here is some info, these links basically say the same thing. Also interesting from the perspective that a lot of TNBC is related to BRCA+:
http://www.breastcancer.org/research-news/triple-negative-may-have-new-tx-option
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Musical - thanks for your note, above.
Quinn - My OHSU MO does factor in Ki-67, although pathology was done elsewhere. My BS (who is also heavily involved in research) always asks for it and we spent a fair amount of time discussing it. On the other hand, my first MO, who's also heavily into research, discounted Ki-67 in favor of focusing on the nodes. With this much variability in just one small geographic region, it's no wonder women are confused by this issue!
My first MO, who came from MSK, told me that MSK doesn't test for it.
Agree with you about the frustrations of the Oncotype report. They keep most of that info very, very close to their chest - no pun intended!0 -
Hi all, been a while. The two things on my mind lately are: should I do nipple reconstruction-4 yrs out from exchange surgery and still using temporary nipple tattoos. Decent but-- my sister had just aureolar tattoos and skipped the reconstruction of the nipple. Can anyone share experiences? Next: AIs. I've done almost 4 years (August) and thank god the SEs subsided. My first 2 yrs were awful and I even had a bone scan to check for cancer. Thankfully it's almost a non-issue, though I've had trigger thumb 3x and am getting a cortisone shot tomorrow for thumb tendonitis. My hand doctor says it can be related to AIs. But I feel decent when I get up and go down the stairs! So now they are saying 10 yrs? for everyone? I am BRCA1 positive and had BMX.
What is luminal A and B? Should I find out what I am?
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