Luminal A vs. Luminal B stage 1 BC

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 - 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.

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

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.

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.

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

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

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 - 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.

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

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.

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!

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 - 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.