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ER+PR-HER-

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christina1961
christina1961 Member Posts: 450

Hi!  Don't know if this constitutes a "mixed type" but I have noticed quite a few on this board with the same diagnosis and wanted to see if most are low ER positive like I am.  I had 5-10% receptors with moderate staining - at first diagnosed as triple negative.  I am going through radiation now following neoadjuvant TAC and a unilateral MX.  I am also going to go into a clinical trial of either CMF/Avastin or Halaven due to the fact that I have a high risk of recurrence due to residual disease following the chemo. I will go on Tamoxifen after that for 2-3 years followed by 5 years of aromatase inhibitors if all goes well.

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Comments

  • Shrek4
    Shrek4 Member Posts: 519
    edited September 2011
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    Christina,

    No, this does not constitute mixed type. Mixed type is when you have several types of BC - like for example IDC + ILC. Or IDC and IBC. What you had is IDC with a more rare form of hormone receptor. I can say I saw the type of hormone receptor you have about as rare as mixed type BC on these boards. Hopefully there is someone else in your situation so you can  exchange opinions.

    *big hugs*

  • pessa
    pessa Member Posts: 137
    edited September 2011
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    I was ER+ PR- HER2-.  I don't know the % ER+.  Had bilat MX, chemo (ACx4) and started anastrazole 10 months ago.  MO advised the anastrazole so didn't ask the % ER +.  I trusted her judgment.  Anticipate taking it for at least 5 years.

  • SStayton
    SStayton Member Posts: 2
    edited September 2011
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    I am also er+, pr-, her-. Our dx is almost identical. Had lumpectomy, doing 4 rounds of dd AC, 12 rounds of Taxol, I start Tues, 6 weeks of rads. 5 years of Tamoxifen. I just turned 35.

  • mammalou
    mammalou Member Posts: 293
    edited September 2011
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    I have a similar DX.  I had 2 lumpectomies, 4 rounds DD AC, mastectomy, and RADS.  I just started 5 years tamoxifen.  I have read that some studies that say that ER+PR- can be a more aggressive tumor and this worries me. My cancer seemed to be more aggressive.  Even though it tested at Grade 1, it had spread to nodes and to the lymphatics of the skin.  This seemed to really surprise my doctors.   It seems that oncologists don't really want to address the PR- aspect though.  I was 90% ER+ though.

  • pebee
    pebee Member Posts: 96
    edited September 2011
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    I am in the same boot- however, my current onc is not saying much about the PR- which is disappointing.......

    I have read that it is a more aggressive type of cancer with a higher reoccurance rate which worries me.  I don't know my percentage of ER. 

    I have asked the following questions - with no answers:

    1. Tamoxofin - studies show that tamoxofin does not work as well for PR-.  So, as a pre-menapausal woman -what are my options? 

    2. Should I get an oomp to block the ER?

    3. I know that chemo reduced my tumor.  When I had my surgery - they found a small tumor in one of my sentinal node.  So, I am back through AC and T.  Should I follow a treatment protocal similar to triple negatives?  Why or why not?

    4. What else can I do to reduce my chances of reoccurance or metasizes?  Diet? Exercise?

    I am going to see another oncologist and see if he has any answers to these questions.  As I have 3 kids I want to make sure that I make it.

  • pebee
    pebee Member Posts: 96
    edited September 2011
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    Oh, and most of the research seems to indicate that this subtype is more prevalent for post-menpausal women.  Since I am pre-menopausal how does this affect the prognoises.

  • PLJ
    PLJ Member Posts: 65
    edited September 2011
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    I did a lot of research on ER+/PR- at dx, as that is what my IHC staining came back as. However, my Oncotype came back as highly ER+/PR+...go figure. Anyway, they don't know for sure why ER+/PR- appears to have a slightly worse prognosis than ER+/PR+, but the theory is that there is crosstalk between the ER receptors and the PR. The PR helps to ensure the ER receptors act appropriately. In the absense of PR receptors, ER may not function correctly, resulting in Tamox. resistance. MO and I had a discussion about this and while not definitive, they think this is what happens in about 30% of resistant ER+/PR- tumours. HTH! PLJ

    P.S. I am premenopausal, too. Given my situation, I wondered if the ER+/PR- tumours that were not resistant had PR+ positivity intracellularly. Oncotype grinds up the tumour cells and then extracts the genes. IHC staining can vary from lab to lab and from slice to slice, as tumours are heterogeneous. Hoping for the best!

    Edited to add I am in the process of deciding on either chemical ovarian suppression or ooph for extra insurance.

  • momand2kids
    momand2kids Member Posts: 118
    edited September 2011
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    this is an interesting topic.  I was ER/PR+Her2-   at diagnosis and after surgery.  then the oncotype results came back and they had me at a slight PR-  I questioned onc and she said that can sometimes happen--- and that the first pathology is likely right, but who the hell knows???  I had my pathology done twice-once at Mass General after the surgery then again at the Dana Farber-- so  I have to assume that their pathologies are "better" than the Oncotype people?  sigh.  I will ask again, as  I always do, at my 6 month.....I was also premenopausal and am now on lupron and an AI......had lumpectomy, chemo and radiation--- probably not much more I could do even if I wanted to.

  • mammalou
    mammalou Member Posts: 293
    edited September 2011
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    pebee;; I'd love to hear the answers to your questions.  I, too, am premenopausal, so I'm not too sure about their post menopause theroy. I meant to talk with my MO about this at my last visit, but I didn't.  Now, I am so mad at myself.  I think I was pretty convinced from my research that they would say that these are just theories and they wouldn't change any treatments because of it. 

    I am worried though.  It seems like the only way they check for tamoxifen resistence is if the cancer recurs. 

  • pebee
    pebee Member Posts: 96
    edited September 2011
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    There are a couple of articles out on the situation... And, I am going to see a breast cancer specialist soon.....

    If we are PR-, then it stands to reason that means something - and I want to know what the something is, and how we can go about minimizing recurrance. 

  • katsOK
    katsOK Member Posts: 23
    edited September 2011
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    Hi, I am not PR - but have low PR so have researched it lately due to a concern about being on an Arimidex with the osteoporosis problems I am having.  However people who are PR - do not do as well on Tamoxifen from what I read.  Here is an article I found, it is not scientific but the author had done other research articles on PR -.  I also asked Ask an Expert about this on the Johns Hopkins site and she gave me an answer also.   The first article http://lookingforcure.org/attachments/article/93/SingleHormoneRecPositive.pdf  suggests eating more fruits and vegetables which I am trying to do now.  It also suggests more exercise and both of these things I need to do  so it will not hurt to add this to my lifestyle.  Who knows it might even help my osteoporosis which was what started this research for me.
  • ingoodcompany
    ingoodcompany Member Posts: 12
    edited September 2011
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    I was ER positive 100% and PR neg Her Neg............ mine was small 5mm and no node involvement. My Onc has not said anything about a concern of being neg PR. I tried Tamox but didn't tolerate it well and will try it again.

  • PLJ
    PLJ Member Posts: 65
    edited September 2011
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    Curious to know how many of you had your IHC staining on initial path coincide with Oncotype? Did both come back PR- or were they different?

    Another thing to remember is that tumours are heterogeneous...the cells can be different combinations with respect to receptors depending on the slice. Oncotype gets a new piece cut...totally different to original slides.

  • jenni__ca
    jenni__ca Member Posts: 77
    edited September 2011
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    HER2 -

    PR 0%

    ER 98%

    my onc put me right on arimidex - and at the time 6 years ago i read for pr- this was the preferred path (rather than tamox then arimidex) but to be honest i haven't researched it since and 6 years is a long time in research progress ... still hanging in here

  • mammalou
    mammalou Member Posts: 293
    edited September 2011
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    kats ok... can you tell me what the ask the expert said?  My onc says that it does not matter that much.  I am not post menopausal, so I cannot go on an aromatase inhibitor yet.  This is making me very nervous about Tamoxifen.

  • pebee
    pebee Member Posts: 96
    edited September 2011
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    Dear Mammalou - mine said the same thing - no AI as you are pre-menpausal.  However, if that is the case, there are ways to become post-menapausal and I want to know if that will make a significant difference in my outcomes.  So far, local Onc is avoiding that question......

  • mammalou
    mammalou Member Posts: 293
    edited September 2011
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    I have been thinking the same thing about getting post menopausal. I also feel the Dr.s seem to want to ignore the question. I don't get it. Is there just not enough research, maybe?

  • PLJ
    PLJ Member Posts: 65
    edited February 2012
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    My IHC staining came back PR- originally so I did a lot of research. When I asked my MO about the fact that it appears to be more aggressive, he said that they really don't have enough data to be definitive. They are also unsure exactly how PR affects function of ER, although they believe there is crosstalk between receptors and the cells without PR may not function properly, thereby resulting in Tamox resistance.

    My Oncotype came back quite PR+ and they sent me studies validating this. Oncotype grinds up the tumour cells so you get an idea of what the intracellular characteristics are like.

    Still, in the interest of safety, I am exploring Lupron injections ahead of deciding on an ooph. Today is for making memories...enjoy every moment! Dx: May 3/11. 1 cm Mixed Mucinous Carcinoma inside 6 cm DCIS Stage 1, Grade 2, 0/1 Node, Oncotype 16, ER+/PR+, Her2-

  • pebee
    pebee Member Posts: 96
    edited September 2011
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    Okay- I am back...

    I got the "ER+ is more important = that drive therapy  - not the PR-".  So, nothing new.  I did get told that chemo usually puts people into chemopause but if my period were to start up again (and it could take 1-2 years for that), then we would need to discuss shutting down the ovaries.

    So, no new info.  Which sucks.  So, if anyone knows of someone who needs a research topic - here we are! 

  • kindone
    kindone Member Posts: 435
    edited September 2011
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    Hi Ladies, I am ER+PR- Her-. I had neo chemo and I had a big tumor 6cm.  I had a complete pathological response.  I am 3 1/2 out and doing well.  I started on tamoxifen and than a year later Al.  My onc also said it didn't make a big difference to be PR-.  I am ER+ 80%.

    I hope with helps.

  • otter
    otter Member Posts: 757
    edited September 2011
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    Hi, Christina,

    My IDC was ER+ PR- HER2-.  I was reading like crazy as I waited for results, and one of the things I read was that ER+ PR- tumors were "more aggressive" and more difficult to treat.  At that time, nobody knew why the numbers came out that way.  There was lots of speculation about ER and PR signalling, but the bottom line (as I interpreted it) was that no one really knew for sure.  I don't know if that has changed since my dx 3-1/2 years ago.

    The IHC results on my tumor were strongly ER+ and totally PR-.  I asked my med onco what that meant -- what was the significance of a tumor being ER+ but PR-?  He gave me the party line:  "It doesn't matter, as long as one or the other is positive."  From everything I'd read, that was not true; but I figured he was the one making the big bucks, so I would just wait for more info.

    Several weeks later, the Oncotype DX results came back... and they were exactly the same:  strongly ER+ but completely PR- (the PR reaction was well below the positive/negative cutoff).  I was glad the results were consistent, but kind of amused when my med onco used the PR- as one of the reasons he was recommending chemo.  "ER+ PR- tumors tend to be more aggressive," he said. Huh.  I guess he'd done some reading while I was waiting, or maybe someone set him straight during a "tumor board" meeting.  I was grateful that I'd decided to go to a major university hospital/NCI Comprehensive Cancer Center for my treatment.

    It might seem surprising that the IHC and Oncotype DX results could be different, but the two tests are measuring different things.  The IHC test looks for the receptor proteins in the cells -- it tells the pathologist whether the cells are making the receptors (the ER and PR).  The Oncotype DX test detects messenger RNA that has been transcribed from the DNA for the receptors -- it tells the pathologist whether the receptor genes are being transcribed, but it doesn't tell whether the mRNA is being translated into protein to make the receptors.

    In any case, ER+ PR- tumors are not as common as ER+ PR+ so it's not too surprising that the molecular stuff isn't well understood.

    otter

  • mammalou
    mammalou Member Posts: 293
    edited September 2011
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    Thanks. It is good to hear good sTories. It seems like it is do hard to get info on this which is frustrating. The docs just say how good the Er+ is. Then you read the pr- stuff and you get scared.

  • katsOK
    katsOK Member Posts: 23
    edited September 2011
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    Mannalou I asked the Ask the expert about PR - and how I had read an old study on tamoxifen not being as good for PR- and did she know of a newer study.  I was concerned because I have some osteoporosis problems and worry the Als are contributing to this but worry about switching to tamoxifen.   this was her answer:

    here is what you are looking for: http://www.ncbi.nlm.nih.gov/pubmed/21339261
    AIs do seem to work better. talk with your medical oncologist about going on bone building agents. and stay active-- walking, swimming. this helps too in protecting your bone health.
    Hope this helps   
  • otter
    otter Member Posts: 757
    edited October 2011
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    Here's the key link in katsOK's post.  This is the abstract of an article gives more info about the molecular details of ER+ PR- breast cancer than any others I've read; and it's recent (2011):

    http://www.ncbi.nlm.nih.gov/pubmed/21339261

    A gentle warning, though:  If you are feeling at all gloomy or pessimistic today, do not read the whole article (available if you're medically inclined and register for free on the publisher's website).  I did, and that sunny sky has suddenly taken on a few more clouds.  <sigh>

    I guess we just do the best we can, right?  

    It's interesting to see how many of us here on this thread were ER+ PR- but HER2-.  I know a few other women who've reported on the BCO boards that their tumors were ER+ PR- HER2-. 

    Most of the research papers on ER+ PR- breast cancer make it sound as if tumors with that combination of markers also typically over-express HER2 (i.e., are HER2+).  Apparently it's true that ER+ PR- tumors are more likely than ER+ PR+ tumors to be HER2+, but most of them are HER2- (as are most of ours).  I realize it's not a scientific sampling to just look at the molecular traits of tumors from women posting on the BCO boards.  But, anyway... with the availability of Herceptin and Tykerb, I'm not sure it's an advantage anymore for a tumor to be HER2-.

    Sorry.  I'm just rambling.  I want so much to be able to forget I ever had cancer; but I can't seem to shake it.  Getting ready for my annual boob-squish (a.k.a. "mammogram") and follow-up with my B.S. day after tomorrow isn't helping.  And the pinkwashing this month isn't helping, either.

    otter 

  • Dilly
    Dilly Member Posts: 394
    edited October 2011
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    ((Otter))

    Thanks very much for the explanations, the link, and for the warning.  Think I'll wait awhile to read it.

    After DCIS in '96, 2010 was a separate occurence of IDC/DCIS in the other breast.  First time lumpectomy only, this time I had lumpectomy and rads.

    Count me among those IDC with strongly ER+/PR-, and Her2- .  One and a half years out, on Arimidex. "Just doing the best we can..."

    Today I'm out hunting endorphins.

  • pebee
    pebee Member Posts: 96
    edited October 2011
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    Otter - I agree - I have read about the Her2 overexpression, but when you come here, there are very few PR- Her2+ on the threads.  In some of the articles that I read (can't find now), ER+ PR- Her2- was a distinct subtype.

    Perhaps we should rebrand this  - double negative and see what happens.... 

  • dogeyed
    dogeyed Member Posts: 84
    edited October 2011
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    PEBEE, I remember one thing about ER+, which I have, and I'm postmenopausal, concerning your question on getting your ovaries out.  My cancer physician explained to me that estrogen is made elsewhere in the body, too, has to do with fat cells and other chemistry things I don't understand.  I wondered because my ovaries aren't putting out anything, you see.   

    Just a few notes on me, I am so reluctant to take one of the E-blocking pills because I remember what menopause was like, I went nuts.  Of course, once the body gets used to the situation, all calms down.  Also, I think there's three categories of those pills, and I cannot take any of them without significant risk of other complications on account of various health issues I have, like osteoporosis is in our family and my back is already crumbling, and one category may cause brittle bone disease.  But everything I've read said takig the E-block pill really does keep cancer in check.  GG

  • PLJ
    PLJ Member Posts: 65
    edited October 2011
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    I have *many* studies on ER+/PR- saved in my favourites on my computer and will post them as time allows. (Have to go through them all and screen!)

    Here is one that found tumours with mixed hormone receptors are associated with higher local recurrence, not distant.

    http://foodforbreastcancer.com/news/er+-slash-pr--or-er--slash-pr+-tumors-more-likely-to-recur-locally-than-er+-slash-pr+-breast-cancer

  • pessa
    pessa Member Posts: 137
    edited October 2011
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    Thanks for the link.  Looking forward to any others you have a chance to post.

  • pebee
    pebee Member Posts: 96
    edited October 2011
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    I do to.... As a weird subtype - we need all of the info we can get.

    I have a couple of files - I downloaded them and then my computer blew up.  Let me find the links for  the info.