Understand Luminal B

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BLS
BLS Member Posts: 31
edited April 2018 in IDC (Invasive Ductal Carcinoma)

I'm diagnosed with Luminal B breast cancer. I had a double masectomy, one cm of idc, and I have a high ki67 rate and nuclear grade 3. Is this a death sentence? Every article I read says "poorer prognosis". Please educate me. I'm currently having taxotere and cytoxin (four treatments). And it will be followed by five years tamoxifen. I'm worried. What do you know about luminal b? Is this a death sentence?

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Hi BLS-

    We want to first welcome you to our community here at BCO. We're sorry for what brings you here, but we're glad you've joined us, and hope you find it to be a place of support.

    We know how scary and confusing this all can be, but your diagnosis is not a death sentence. There are many treatments available to you, including chemotherapy and hormonal therapies and treatment targeted to HER2 positive cancers. It's just a matter of finding the one that works for you.

    You might be interested in reading through our HER2 positive forums, you'll be able to connect with other members in your shoes, and it's full of tons of helpful information: https://community.breastcancer.org/forum/80

    Please let us know if you have any questions, or need assistance in any way!

    The Mods

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    Hi Mods. I'm confused bc they say I have luminal B however im her2neu negative.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Hi BLS, sorry for the confusion. As far as we know, HER2-positive breast cancer is called luminal B breast cancer. Did your doctor say you are her2neu NEGATIVE?

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    Yes, she did Say I am her2neu NEGATIVE. Is this possible or is she possibly mistaken? She got the information from my mammoprint results.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2015

    BLS - sorry you find yourself here, but welcome. I took a much-needed break from BCO to focus on some self-care, but your post inspired me to log back in to respond.

    I, too, have been told my cancer was Luminal B. My original path DX was ER+ 50%, PR+ 10%, HER2 equivocal. FISH testing determined HER2-, "but just barely" I was told. Oncotype changed all of that; barely ER+, PR-. This is when my MO pronounced I had Luminal B subtype. Later Ki 67 of 50% confirmed this for my MO. There is literature that reports one must be HER2+, but other studies (and my MO, who I trust implicitly) indicate Luminal B is determined by low or negative PR and high Ki-67 which often correlates to high grade (3). I am on the high side of grade 2, I've been told.

    While I've seen the same "worse prognosis" reports, I also know that our specific subtype responds well to chemo. I see mixed reviews on how well it responds to Tamoxifen or AIs (I take neither).

    So no, this is not a death sentence, but I understand why it feels that way. It can be hard to shake that feeling, but I encourage you to search around this board and you'll find plenty of good, well-educated conversations about Luminal B.

    *hug* to you as you start your journey.

    Nancy

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  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited March 2015

    You can be Luminal B with a ER+ PR+ and HER2- pathology, if you have high (above 12-15%) Ki-67. 

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    Nancy our stories sound so similar. I was originally told my her2neu was "equivocal." Then the FISH Test result was her2neu "equivocal." So the mammoprint came back her2neu negative, but stated I'm luminal B positive With high ki67, nuclear grade 3. Some say I have to be her2neu positive to have luminal B. While thats confusing, I keep wondering if women live more than ten years after such a dx?

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    Thanks. Now I understand what both you and Nancy have explained. I do have a high KI67 score of 40. So does that mean I should have more than four rounds of taxotere and cytoxin? I'm worried its not enough!

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2015

    BLS, here's a link to one of the best articles on Luminal B that I've found:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC343009...

    I see you had Mammaprint - did you have the Oncotype too, by chance

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  • waiting-to-exhale
    waiting-to-exhale Member Posts: 61
    edited March 2015

    i am waiting for my oncotype score right now but the assumption is that i am luminal B. I am grade 3 er+pr+ her2 neg. my tumour doubled in size in 2 months. My oncologist thinks there is a very low chance that this isnt luminal b. The literature on luminal b is quite unsettling. And everyone initially congratulates you for being hormone positive.

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    waiting to exhale: im sorry you're waiting. I don't know what to say to you bc I don't understand what our prognosis is or why. I'm trying to find out and hopeful that someone on here will tell me/us!

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    This is interesting information you've all brought to light on the HER2+ vs HER2- luminal classification. We're passing this along to our editorial team and medical advisers to see if we can clarify some of the info we provide on the site. Thanks all for sharing this important information!

    --The Mods

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2015

    BLS,

    Luminal subtype is a piece of the puzzle, much like hormone receptors, HER2 status, Oncotype/Mammaprint, node status, etc. it doesn't define the course of your disease with certainty, but helps inform treatment options. For example with my Oncotype score of 42 I have a 25%-ish chance of recurrence (*). Conversely, I have a 75% chance of no reoccurrence. If I reoccur, it's really 100% (because it happened...) so the numbers give me information but can't tell me with certainty what my future holds. this is why I took a little time off from being here: I needed to work on understanding that there are no guarantees, no certainties, no promises - but there is MUCH hope.

    You're still gathering information and learning oh so much. I encourage you to talk with your MO, express your concerns, and ensure yourself you're getting the best treatment for your type of BC.

    ETA My original chemo plan was the same as yours, but my high Oncotype score allowed me to join a clinical trial that required AC/T

    (*) my chance of recurrence is 28% with no treatment, but 18% with Tamoxifen and chemo. I chose chemo but am not taking any Tamoxifen or AIs. Tamoxifen is a given with the reoccurrence score so I'm somewhere in between the two...

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    Nancy HB,

    Thanks for taking on and so kindly and thoroughly answering my questions. Your words are giving me hope. While trying to learn how to navigate on here to see your response I clicked on your biography. ...I too am a social worker. I'm an LCSW. Wondering if we're related. ...just joking :0) Appears like we have a lot in common.

    Anyways idk if they did an onca type but my MO did tell me my recurrence rate, (when she received the mammoprint results). My MO stated if I do nothing at all it was "40 percent." My big concern was exactly what you mentioned. My treatment. I'm concerned about having only four treatments of taxotere/cytoxin cocktail. I fear it's not enough. What are your thoughts on this?

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    Mods,

    Thanks for working with the editors to add information. I feel best knowing all I can as I want to make informed decisions about my tx and my life. I need to advocate for myself and need concrete information to do that. Every bit helps.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2015

    BLS,

    You're right - I see that our diagnoses are so very similar! Between that and being SWers, we may really be related. :-) So tell me, how does that make you feel?

    I hope you have a good relationship with your MO, and are able to bring up your questions and concerns with them. My MO has been wonderful in answering every question I've ever posed, without any hesitation. I asked if this would come back; I asked for testing for early detection of recurrence; I asked if there was anything I could to prevent recurrence. I asked if I was going to die. My NP hugged me and told me she couldn't answer those questions, but if they one day were answered for me, she would walk with me as long as possible. I knew she couldn't tell me what I desperately wanted to know - no one can - but it felt good to know my concern and fear were appreciated and taken seriously.

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    I feel lost, angry, bitter, depressed, anxious and helpless. My life since Dec. 1, 2014 is a blur. It appears there are no answers, nothing is black and white, only shades of gray and there is nothing I can do but pray, eat well and live moment to moment. And, while I should be and am happy and thankful for each day, I'm also taunted by cancer and wondering if and when it will appear in me again and what torture it will put Me and my family through. Uncertainties are very hard to accept. I hate cancer.

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    I go to UPMC/ Magee....wondering of there is someplace better? ! Cancer Centers of America? Anyone with thoughts?

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  • JosieDS
    JosieDS Member Posts: 12
    edited March 2015

    BLS, I sent you a private message. Josie

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    BLS -You and I share many pathological features. I really understand all of those feelings. Being uncertain about SO much is really, really hard to take and I don't think many people 'outside' can grasp how hard that is. It does NOT help that the information on Luminal B is so varied and sometimes contradictory.

    I've not had surgery yet, so no Oncotype or Mammoprint yet and thus whether Luminal B or not is still up in the air. My NP and MO both said that my biopsy pathology had features that would suggest that it is Luminal B. I really, truly agonized over the implications. My Ki-67 was high, the cancer was in at least one node and it was grade 2 - not the worst case scenario, but not the best, either.

    My MO did tell me that if we did chemo we'd be looking at 4 rounds of T/C - so perhaps that will help reassure you that your treatment is appropriate. (My MO is research director for a LARGE program and trained as MSK; I think she has a pretty good grasp of what's current and appropriate. She, like me, doesn't believe in overkill but in doing 'enough as we understand it.')

    I have had very, very good results with neo-adjuvant Femara - the Ki-67 was down to 4% after one month and my lymph node now LOOKS and feels normal (it hasn't yet been re-biopsied). I won't know the full story until after surgery but I will say that I am MUCH more hopeful now than in the beginning. Once it was confirmed that Femara was working, the whole picture shifted. I know it could shift again in a different direction but I'm happy to take some good news for a change.

    IF your MO suggests an A/I or tamoxifen please give it serious consideration. It can make a world of difference for our prognosis, truly. No guarantees, but definitely worth a trial.

    I wish you the best. I hope all this helps a little bit. Do feel free to PM me if I can answer any questions or be of help in any way.

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