Please help!!

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Teakay
Teakay Member Posts: 72

In tears! I need some help. My estrogen showed 6%, progesterone, 0, her2-. My grade was 1, ki67 was 6%. My oncologist says that this isn't triple negative....would like opinions?

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  • bak94
    bak94 Member Posts: 1,846
    edited October 2011

    I think different doctors look at it differently with that low er %. I am er 3% and my doc is considering treating after the chemo as if it is positive, but I don't think he has made his mind up. I don't know my ki67, but I think 6% is really low which is good. Has your doc given you a treatment plan yet? Maybe you want to get another opinion? Hang in there, I hope someone more knowledgable comes along to help you.

  • Luah
    Luah Member Posts: 1,541
    edited October 2011

    I'm not so knowledgeable on this as both my ER and PR were dead zero... but I would say by your grade and ki67 that your tumour doesn't seem like a typical aggressive TN. Was this on biopsy (which I've heard can be inaccurate) or your final path report? Has your onc said anything about running an oncotype test - that might help confirm the status and suggest best treatment. Hang in there.

  • Teakay
    Teakay Member Posts: 72
    edited October 2011

    The final pathology report  and biopsy both said grade one. 1 on mitosis, 2 on tubular and 2 on something else...which led to a 5/9 on the scale.  They only ran the ER/PR Her2 and ki67 on original biopsy and not on the final hospital path. Report. My oncologist absolutely doesn't think that it is aggressive triple neg...but hasn't said anything about the test because I have one node involvement so chemo is a must. I don't know.....I am a mess right now. I am stage 2a. Do they usually run scans before chemo? Thanks for any help and encouragement.

  • momx5plus1
    momx5plus1 Member Posts: 17
    edited October 2011

    Teakay,

    I understand your worry as I was diagnosed with a very aggressive TN tumor 3/7/11. My BS nor my pathology report gave a % on my hormone levels so this is new to me. All my hormomne receptors were negative, my grade was 9 and my ki67 was 87%. No nodes were positive (didn't know this for sure until my BMX on 9/26/11. My BS said at my consult that there was no way I could get away with not getting chemo so I opted to go the neoadjunctive route (have chemo first) as we would know if the chemo was affective on the tumor when I had surgery and the final path report was issued. As each case is different I would say hang in there but be persistant about your care and do your homework. When you go to discuss your treatment plan take someone with you as will only hear a quarter of the things the doctor will say if that much! You found the right place as these ladies (and any men on the threads) have a wealth of information to give and better yet are a great support network!

  • BellaJean
    BellaJean Member Posts: 65
    edited November 2011

    Hi all,

    I need some help. Just diagnosed with IDC stage 1 and had surgery 3 weeks ago. On Monday I was told my tumor is 1.2 cm/ PR- / Her2- and between 1%-5% ER+. Relapse risk 13.8% and chemo would only reduce this risk by 3.5%  On Friday after Tumor Board I was told that my tumor is more like a triple negative; and might even come back from oncotype test as ER negative.

    I am going for radiation but don't know what to do about tamoxifin or chemo. I was told by my MO that it is a "dilemma" what to recommend for me, as I am low risk for relape and low benefit from chemo. Also, it is my personal decision. Has anyone had any experience with low ER status and do they get it wrong so you end up triple negative and what about tamoxifin if you do have some postive ER receptors.  

  • christina1961
    christina1961 Member Posts: 736
    edited November 2011

    Bella Jean and Teakay, I was originally diagnosed triple negative by biopsy. I had neoadjuvant chemo and a unilateral mastectomy. Following MX, the residual tumor was tested and they found 5-10% ER+ receptors with moderate staining.  There is something called an Allred score - the score takes into account the % of receptors as well as the intensity of the staining (low, mod, high.) I  think there are data to support that anything with an Allred score above 2 can benefit from anti estrogen therapy. Mine would be a 4.  It's been a while since I've read the different studies about all this BUT I can say that I have seen 3 different oncologists and all 3 recommend tamoxifen for me - one says it is unlikely to do much (she is a research onc); another one (another research onc) says I am "low estrogen positive" and believes it will have benefit; and my local oncologist also believes it will have some benefit.   There is a thread about this ER+PR-Her2- on the "Mixed Breast Cancer" topic and there are several articles posted there about it. Sometimes this type is tamoxifen resistant but my onc said that is usually when HER2 is elevated. The plan for me is tamox for 2 years and if I remain menopausal (chemo did that!) then switch to an AI.

  • bak94
    bak94 Member Posts: 1,846
    edited November 2011

    I am 3% er positive according to biopsy. I did chemo first and they will test any remaining tumor to see how it tests for er. Then mo will decide the next step, whether I have tamox. or not. Christine, thanks for posting the info, I need to check it out.

  • BellaJean
    BellaJean Member Posts: 65
    edited November 2011

    Thanks. This is encouraging as I want to take tamoxifin. No one really thinks chemo will be of much benefit at this point. What got me was when they said that the oncotype might show I am ER- and thatin any case tamoxifin with such a low ER+ was not of much use. Will check out the articles.

    Here is another ? that you may or may not no the answer to: I am told my Grade is 2 but on the path report it shows II/III with a score of 6-9. Did someone misread my path report? or what does that II/III mean. Thanks agaoin for any help and direction you can give me.  

  • christina1961
    christina1961 Member Posts: 736
    edited November 2011

    Bella Jean, The way that is written might mean 2 out of possible 3 and 6 out of a possible 9- in other words if it was grade one it would have been written "I/III" - The overall grade range is 1-3 but the way they reach that is on a nine point scale (Bloom Richardson scale) - 1-3 on mitosis, 1-3 on tubule formation, and 1-3 on how disorganized the cells are (the way I understand it anyway- please, anyone correct me if I'm wrong on this one.).  So if someone has a score on the nine point scale of 1-3 they are a Grade One; 4-6; Grade Two, etc. Hope this helps.

  • Luah
    Luah Member Posts: 1,541
    edited November 2011

    christina, that's my understanding of it too. And most TNs are grade 3, though not always.

    We've been through some things together/With trunks of memories still to come/Long may you run (Neil Young). Lx, ALND, 4 DD AC &12 weekly Taxol, 31 rads, completed Jul 10
    Diagnosis: 9/14/2009, IDC, 2cm, Stage IIb, Grade 3, 1/14 nodes, ER-/PR-, HER2-

  • BellaJean
    BellaJean Member Posts: 65
    edited November 2011

    thanks...got it. OK. Another question. So my path has me as Estrogen receptor Low positive/ with 5% positve cells. Average staining: weak. I've also been told that my ER+ ranges from 1% to 5% positive.

    I am then told by my MO that I might be triple negative and that in any case my tumour will act more like a triple negative. Could someone tell me: how to understand this. I don't know if I am triple negative or not...

     Final question: I am going for rad. Chemo is not recommended. If I am triple neg. can I have chomo after rad. Does anyone know? Thanks again for helping a newbie find her way. Bella        

  • christina1961
    christina1961 Member Posts: 736
    edited November 2011

    BellaJean,

    I believe that chemo is given before radiation. I had it before surgery so my situation is different.  I am actually getting it again following radiation but I think the "normal" sequence is surgery, chemo then radiation.  As far as being triple negative or not, I think it depends on the oncologist - read what I wrote above - one of the 3 I saw seemed to think that the 5-10% ER receptors with moderate staining that I had will not make much difference at all - and she told me it "will behave like a triple negative" - the other two seem to think there is benefit from the anti estrogen meds for me (and actually from the studies I've read it seems to indicate there might be.)  I know I wasn't satisfied until I saw 3 different oncologists - and I still may consult a fourth once I'm through with this clinical trial to see the best way to handle this low ER thing. There is nothing wrong with getting a second opinion for piece of mind - it is our bodies and we are the ones who have to live with the decisions we make.

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