Luminal A vs. Luminal B stage 1 BC

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited July 2016

    Lisey, It's tough to be in the grey area with regard to treatment, especially when we want definitive answers that lead to treatment that guarantees no future recurrence. You can see from my stats that even when you get those definitive answers (Oncotype score of 42 and AC/T chemo), sometimes it comes back. We make decisions based on the information we have in front of us, and trust that our doctors are advocating in our best interests. I hope you get enough information at some point to make a decision you're comfortable with, if not confident in.

    Edited to remove my description of mitosis vs. Ki67, as Shetland gave a link to a better description. (Thanks!!)

  • cubbieblue
    cubbieblue Member Posts: 68
    edited July 2016

    Thanks SpecialK. My pathology report says k167 is ">20% unfavorable" and I'm curious what the actual number is. Even though everything higher than 20 is worse, I can't help thinking I would feel better if I knew the actual number was 21. But then again I would feel worse if the number is in the 80s or 90s.

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    So, I called the Onc's office yesterday, they confirmed they did order the mammaprint and it's in process... The nurse mentioned the $500 bill again as my payment - which is totally fine. I've decided if the mammaprint is low, I'm foregoing Chemo (even with the Oncotype as 20 and the Ki67 as 30-35%, becuase of the low mitosis value and the docs opinion ER hormonals would be better. HOWEVER, if the mammaprint comes back as high, I'll do the Chemo (may even ask for the AC rather than the CT) and I'm also going to ask for the PET to be sure there are no mets. I've seen far too many women on here who have 0 nodes affected but somehow had mets.


  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    Lisey - I think a PET is perfectly reasonable to ask for. In the period before my Stage I surgery, it was not ordered for me, but once they found out brca2+, they put it on my schedule. My ultrasound had already come back negative for nodes, though US only 80% accurate. I can only guess at my late age of first dx with brca2+ they might have thought another cancer could be brewing in there, otherwise they would not have asked for it, but it gave me great peace of mind to know nothing was found, though my SUV uptake of 8.3 was just another indicator of how aggressive my BC was.

    I will add, they are expensive and do involve radiation - the drawbacks.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    cubbieblue - my Ki67 said >60%, so maybe >20% means closer to 20% than 30%, or even 25%???? A swag, but a close one, plus they say 3 pathologists would come up with 3 different Ki67 values. Very subjective to start with.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    SpecialK - Thanks for the links. I guess I feel lucky I had a forward thinking MO Rx my chemo who gave me a platin. Though I am not TN, perhaps some of my tumor is/was, I don't see why cisplatin would not also help brca estrogen positive BC either. The interesting news is that non-brca BCs could be helped by cisplatin if tumor DNA repair function is the cause of the cancer, as it is in brca cancers. Interesting to know they can determine that too! I wonder if they do outside of clinical studies? I always wondered if they could actually determine a brca related cancer in brca patient versus a wild type BC in a brca patient and why don't they care to know? Interestingly enough, in a brca FB group I belong to, a scientist at Myriad said that my variant (there are thousands) of my brac2 mutation is only partially hobbled and perhaps why our family has later onset of disease (in my family, in our 50's).

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    lisey - important to note that cold caps frequently work less well for Adriamycin. If you are intent on keeping your hair you should consider that.

    For Ki67 you will sometimes see a >20% because it may be theircutoff between "low" and "high", much like for LVI you will see "present" or "not present" with no indicator of how much there is. Some pathology reports actually show the percentage, mine did give a specific number - unfortunately quite high, but not surprising given Her2


  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Ah, thanks for the extra info SpecialK... I will weigh that problem as well now. The Onc says if we were to do chemo, she'd suggest the C/T... llike most people have here.. but these threads show so much info and when someone asked why A wasn't being used anymore and another posted an article saying it's more effective than C/T but only if you don't have heart issues (no issues for me) I thought.. ok, I'll go with the A...

    In the end, my gut says I won't need chemo... (my gut also knew I had BC even last when the docs said my mammogram was perfectly clear. but if I do chemo - my hair is something I don't think I would sacrifice. It would take at least 10 years to get back to where it's at - if it ever even came back. I'm willing to lose my boobs completely and stay flat... but I draw the line at at least trying to save my hair.

    On the PET issue.. I've had melanoma, so Im VERY cautious about radiation (hell I think those extra mammograms I got 2 years ago and last year (they did like 20 on me since I'm so dense) fueled my BC. If the mammaprint is low I'll forego the PET unless I have some symptom I'll look out for.

    I've got some young kiddos to raise and a husband to pester. I need at least 15 years before the kids are out of the house and 'hopefully' independent. 15 years is my goal (I'd be 56).. anything above that would be pure honey on top.

  • windingshores
    windingshores Member Posts: 704
    edited July 2016

    Just want to add that one doc told me that sometimes healing biopsy tissue that gets included in post surgical specimens can throw off ki67% (and possibly other things): healing tissue has proliferative cells.

    Genomic Health uses the whole block to minimize effects of heterogeneity. They have I think 5 measures of proliferation including ki67 in the Oncotype Dx. Ki67 is not reliable according to many doctors.

    Also,  my biopsy pathology said I was HER2+. This may have been due to inclusion of DCIS material that contaminated the specimen, so to speak.  My second opinion MD suggested that. MY 4th opinion MD retested it more thoroughly and it was negative.

    My experiences may be unusual and may be distressing for some. None of these tests are 100% reliable as guides in my world!

    With grade 3, LVI, and a ki67 of 20, I also has my Oncotype done since the biopsy sample was used in the first one (without my knowledge) and since the results of the biopsy pathology were off, I also wanted an Oncotype done on the surgical sample. I had to fight hard for this but finally found an oncologist who agree with me.  NOT Dana Farber.


  • farmerjo
    farmerjo Member Posts: 518
    edited July 2016

    Lisey -

    Glad to hear you're getting the MammaPrint - mine came back as high-risk, although Oncotype was 19 (a score based on a negative SNB that wasn't). MammaPrint is the deal-breaker.

    Cold caps - I decided, due to my pending Red Devil regimen, to forgo the caps; the success rate does not justify the expense.

    Instead, I am doing this: www.chemodiva.com. Check it out!

  • cubbieblue
    cubbieblue Member Posts: 68
    edited July 2016

    QuinnCat and SpecialK, thanks for your input on Ki67. Both of your comments make me feel a little better. I'm going to try not to focus on it because it does seem subjective, and I keep reading more and more comments that it is not viewed as reliable.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    My Ki67 was 28%. I was a basket case over that and kept questioning it. My MO told me not to focus on that at all.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    thinking - mine was double that, I'm still here

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    specialk.... Makes me feel better. Some days I am okay and think I have this beat and then other days I can't stop searching for answers they did not give me or for people with similar pathology that are doing fine.

  • DaraB
    DaraB Member Posts: 945
    edited July 2016

    How long does it take to get back the MammoPrint test?

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    I was told it will take a few weeks. So As soon as my mastectomies have healed a bit (I had the TEs removed 3 days ago) I'm supposed to just start the Tamoxifen and wait until the mammaprint comes in. Then, depending on that result I just keep taking the Tamoxifen, or we put me on the Chemo. She said there's no issue with starting the tamox now and going off it if chemo is warranted. P.S. Farmer, what is the Red Devil? Is that AC? - thus it won't work with cold caps?

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    I wasn't given the hormonal drug after my surgery. My surgery was October 23 and didn't start chemo until December 5th due to mastectomy healing. It it common to be put on hormonal drug until you get the chemo? When I met with the MO after my follow up with the breast surgeon he never mentioned taking it then. Just when I finished chemo.

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Positive, I think that's because you knew you'd do chemo with the positive node, so why start Tamox just to stop again? In my case my Onc thinks there's a very good possibility the mammaprint will come back low and so she just wants me to start Tamox now... if she's wrong and it comes back high, I'll go off Tamox and do the chemo then restart again.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited July 2016

    Lisey - I did the cold caps with CT. My photos are on my profile. I was active on the thread at the time. The women who did ACT were not successful with the caps. Honestly, my health comes before my hair. Had ACT been recommended I'd have skipped the caps. The caps prevented me from needing a wig. I have shoulder length hair that was completely back to normal in 18 months. Everyone is different but it averages 1/2 inch per month of growth.

    ThinkingPositive - I get what you're saying. It's the uncertainty that is hard to cope with when there are differing medical opinions. It's hard to trust the MO and dismiss ki67 when there are so many scary articles online.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    lisey - Adriamycin is the "Red Devil" called this because the drug is actually red like cranberry juice, and because it can cause a lot of nausea and other side effects - it can be a tough drug. This regimen is usually administered AC first, dose dense (once every 2 weeks for 4 doses), then Taxol is given separately, either dose dense (once every 2 weeks for 4 doses), or for 12 weeks on a weekly basis. Because the AC comes first it has the most impact on the hair and cold caps have not been as successful.

  • DaraB
    DaraB Member Posts: 945
    edited July 2016

    Warrior Woman, I just love your voodoo doll! I think it's one of the best ideas yet! Thanks for posting the picture! Dara

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited July 2016

    Thank you, Dara.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    I once read a study that said a Ki67 of 55% had the best results from chemo, tapering off of either side of that value. At the time, I was looking for anything positive about my 60% value. I assure you, that was the only good thing I read about my Ki67 at the time, so it stands out in my memory, but I'm here 4 years later. :)

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    I'm hoping my Ki67 level of 30-35% is the result of healing biopsy tissue that was put into the mix. My Onco of 20 sucks.. but as a 1A, Grade 2, Nottingham: T:3, N:2, M1 = 6, I hope I just need Tamoxifen. I did request the Mammaprint though and if it's high I'll have to really think hard about if I should do Chemo... That TailorX study for intermediates needs to be out NOW.

  • Blythe
    Blythe Member Posts: 2
    edited July 2016

    I was diagnosed with node negative IDC in October and had lumpectomy and radiation at a supposed Cancer Center. I was upset when I saw the final pathology report because the excised tumor was not checked for ER, PR or HER receptors nor was a Ki67 done. I was told that they did not consider Ki67 valid anymore nor was it necessary to test the main tumor and that the hormone receptor tests done on the pre-surgery biopsy were sufficient. ER was 95%, ER only 5% and HER-2 was negative. I was concerned about the low PR as these patients do not respond as well to AL's (I am 68) I had to insist upon having Oncotype done and that result was 15, which is a grey area. One of the reasons I wanted the Oncotype done was because I knew they would check the Ki-67. I then had Mammaprint done and that came back low risk. So no chemo. I wish that I had also had the molecular subtyping done (BluePrint) when I did the MammaPrint. I am very confused about whether I have Luminal A or Luminal B. I am now taking Aromasin and doing much better on it than I did on anastrozole. Perhaps knowing the type would make no difference in treatment but I just want to know as much as I can. My mother, her sister and a paternal aunt died of BC. My grandmother died of ovarian cancer. My onco would like me to stay on an AL the rest of my life. I realize that no one has a crystal ball but I an frankly a bit anxious about the almost negative PR. So how do you determine if you are Luminal A or B? Is anyone else extremely low in expressing PR? Some labs would consider 5% as negative. I know that I developed BC because of hormone imbalance for years caused by stress. Apparently the body uses progesterone to make cortisol and so estrogen is dominant as PR is lessened. I think what I really want to know is what my prognosis is, meaning how long before cancer shows up somewhere again and chemo will be required. And how do I know if the Aromasin is working? It seems like one would check serum estradiol levels before beginning hormone therapy and then check again after being on the therapy just to see if the drug was working. A lot to ask my onco at my next appt. I left the "Cancer Center," by the way. It was obvious from many things that spending as little money as possible was their number one priority. I am not talking about Cancer Centers of America!

    Sorry to sound negative. I am stage one but just do not have a good feeling about things. Almost a gut feeling. The drs. told me that our goal was for me to die of something else before the cancer came back! Not sure how to feel about that!

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    I had a very complete pathology done on my tumor and it was a little different than my biopsy results. I was told by my mo that there is no way to tell if my AI drug is working against cancer cells.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited July 2016

    so they actually said "before the cancer comes back". ? That's sounds like it's inevitable that once you have breast cancer it's going to come back. Not exactly what my MO and BS said. That's why I worry about what I have been told and whether they told me info just to keep me thinking Icould and would be okay. "Chemo is needed JUST in case some rogue cells MAY be out there". "Why are you worried your cancer isn't the kind that goes anywhere". Really??

  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Blythe, I know of NO lab that thinks 5% PR is negative.;.. NOT ONE. 1% is the cutoff for PR, so I'm not sure where you are getting your info. Like you I'm 95% ER / 5% PR. Also, an Oncotype of 15 is consider LOW RISK... the grey area starts at 18-30. I happen to be 20. I'm now waiting on the mammaprint for further guideance, but I don't think I'm going to do chemo... I'm also waiting on my Kailos Genetic Metabolism testing as well... I may do the OS and AI depending on the results of that. Knowledge is power.

    Also, if you are concerned about your time, look up the SOFT study. 98.6 of Stage 1A / 2As had no distant reoccurance after 5 years and after 10 it was 95%.... That's some really good odds you'll live out the rest of your life completely cancer free if you do hormonals.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    lisey - just wanted to note that the SOFT trial was made up of pre-menopausal women, and Blythe mentioned in her post that she is 68 and wondering whether aromatase inhibitors are working for her in light of her low PR%, and truly menopausal status.

    Blythe - linked below is Komen's info on molecular subtype, and there are some other slightly differing models within this thread. Without a specific Ki67% it is more difficult to tell but a lower Oncotype infers less aggressiveness, so potentially a lower Ki67%. On your biopsy pathology report is your grade score broken out to the three categories of mitotic rate, tubule formation and nuclear grade? Each of these receives a score of 1-3, and combined these make up the total grade score. A low mitotic rate - or rate of cell division - may be encouraging as it can correspond with a lower Ki67%, since it is a protein produced with more rapid cell division. ER+/PR+ with lower Ki67 would mostly likely be Luminal A. It is not that uncommon to exclude Ki67% from the pathology report as not all labs test for it, and not all oncologists put faith in its use for treatment decision making, independently of other clinical factors. Sometimes there is no re-test if what is revealed in the biopsy samples is enough to make certain treatment decisions. I would be an example as my biopsy showed 96% ER+ and Her2+ so it was assumed that I would have chemo and Herceptin, and be on aromatase inhibitors as adjuvant treatment. I doubt re-testing my tumor would have changed those decisions. This is certainly not universally true - another example would be someone who has an equivocal result on Her2 status at biopsy but then tests strongly positive or negative when the tumor is looked at post-surgically. This could also be true for someone who is very low ER/PR on the biopsy sample, and further examination is needed to make treatment decisions. If you are ER+ and Her2- and Oncotype is done on your surgical sample that is a de facto second look also.

    https://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html

    There is data showing that having low PR may mean that Tamoxifen is less effective, but because 3rd gen aromatase inhibitors work by a different mechanism they show effectiveness for low PR patients. Here is a link with some interesting info regarding aromatase inhibitors for a variety of patients.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2228389/

    Testing postmenopausal women for estrogen levels is problematic because of the lack of sensitivity and inaccuracy of lab tests measuring non-ovarian generated estrogen. Because aromatase inhibitors have a better recurrence prevention track record than Tamoxifen, for this group they are prescribed unless there are pre-existing co-morbidities, or side effect intolerance for this type of drug.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited July 2016

    Blythe, like Lisey, I'm a 95%ER and 5%PR IDC. My oncotype was 39, and I was grade 3. Ki67 was 60%. If that helps. I am 4.5 years out from surgery.

    Given your family history, Blythe, I would be most worried about you being brca+ (I am that too). Being brca+ was news to me, at age 58! And that's being the youngest child of 3 sisters who all had BC in their mid-50's, and one half sister at 79 who now has had BC twice and is 86 now. There are thousands of brca variants, whether brca1 or brca2. I found out via a FB group, from a Myriad scientist, that I have a variant that is only "partially hobbled" explaining the late age of first cancer. None of that was known, or spoke of, by my geneticist because it is proprietary information owned by Myriad (though a class action suit is gearing up to release this kind of information, currently). At 68 you might not meet the insurance requirements for being tested (which are hogwash given my situation and I only met because my grandmother had 6 daughters!), but Myriad has lost exclusive rights for testing and I think the test itself is much much cheaper these days. My concern for you, if positive, would be ovarian cancer. That's easy to prevent, but not cure.

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