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ER+PR-HER-

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  • mks16
    mks16 Member Posts: 154
    edited April 2012
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    My story is simillar to Carmelle's. I'm 38 and just had my ovaries removed a week and a half ago. Supposed to start on AI now, after being ten months on Tamox.

    My decision to have oophorectomy is also partly based on the fact that my 32 year old sister was diagnosed just a few months before me, although we don't have any other history of BC in family. Her tumor was > 95% positive for ER and PR.

  • otter
    otter Member Posts: 757
    edited May 2012
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    (bumping for current discussions on the Hormonal Therapy forum...)

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    thanks otter - going to read all - I owe ya' an abaloneWink

    ETA:  Full confession, here cuz Otter menioned it on another thread. Honestly too lazy ( "know thyself") to read all the posts, I stopped aftere the first page, so will  add my data and follow on from here.  Age 62 at diagnosis, node negative, E+.  The % was not given on surgical pathology, and Oncotype test wasn't showing it in 2007 either.  So just know P was "less than 10%" per my wondereful docs at Dana Farber, where I've been for the whole treatment.  DDA/C, and almost 5 years ( this August) on Arimidex, and YES, I will take all sorts of "congratulations" for making it this far in compliance.

    Maybe getting an Oncotype of 31 was the REAL reason for putting up with all the SE's of being on the A Team.  Learning that being P- might be even more a risk, is a bit more than I ( self crowned the Queen of DeNile) can deal with.  But, thanks for all this information. The P- was NEVER mentioned in all my wonderful conversations at DFCI.  But then, I never asked!!!!!!

    Will share anything I learn.  Thanks again for this thread.

  • pessa
    pessa Member Posts: 137
    edited May 2012
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    Congratulations on almost 5 years!  My MO never mentioned the significance of PR-.  I got a BMX, A/C x4 and have been on Arimidex for 1 1/2 years.  My ONC score was 28 so I went with the chemo.  Hoping this is a thing of the past.............

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    Pessa - I did the BMX route too - an SO grateful I did.  Pathology found DCIS in the "good" breast - and it was the Grade 3 that convinced me I wanted to use the BIGGEST GUNS I has options for in the beginning.

    So surprised to learn of any significance to being P-  and now wondering if that was a factor in my Oncotype 31?

    Will followup these questions with my docs, Dana Farber, and share any information I get.  They're SO GOOD about answering questions, and actually one of my Favorite answers is, "we just don't know, yet."

    Mostly on last visit, just kept reassuring me I'd done everything I could, congratulated me on the almost 5 years of Arimidex.  Compliance, women stopping taking the stuff, is a "significant" problem.  We know why!

  • pessa
    pessa Member Posts: 137
    edited May 2012
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    Sunflower:

    I would be interested in hearing what Dana Farber says about the significance of PR-.

    The reason I had a BMX was that I found my lump myself, ONE MONTH after a "normal" annual mammogram.  Along with the .9 cm IDC I had 8 cm of DCIS.  The DCIS was not seen on mammo, US or MRI, only found after the lumpectomy for the IDC.  Did not get good margins so at that point I decided to take them both off because there would be no way to follow using mammo or US or MRI because the DCIS was not seen on them! Am happy with my decision.  There were some precancerous cells on the "good" breast as well.

    Am finding it harder to stay on Arimidex as time passes, but it's more tolerable than a recurrance so I will do my best to stick with it.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    Pessa

    Check out the AI SE thread - it's long - but post anything that's especially troublesome for you - you are NOT ALONE - it's a tough medication, and proven to be effective - so check in & find out what helps!  Seriously - compliance is the only thing that might keep it from not working - many women quit, but I'm with YOU - anything is better than a recurrance. My experience is that the SE's are cyclical, doing so many things by now, I honestly can't say WHAT is the main thing helping - but all seem to work together.  If I had to "isolate" a few: gluten free, no dairy, no sugar, ACUPUNCTURE, and monthly massage, good VitaminD blood level ( about 50).

    http://community.breastcancer.org/forum/78/topic/755969?page=168#idx_5029

  • pessa
    pessa Member Posts: 137
    edited May 2012
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    Thanks, Sunflower.  Will explore more options.  Perhaps acupuncture might be helpful. 

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    Pessa

    Just came home form my monthly acupunture treatment..aaahhhhhh.  Really, it is just the KEY, for me, of feeling good.  Many of the major Cancer centers ( Dana Farber, Sloan Kettering, Yale) all have complementary care departments offering acupuncture AND massage.  Several studies done by Harvard Medical School - reported by NIH, on the value of acupuncture.  Most insurance still doesn't cover it,but sure they will soon.

    Also check into massage - esp. if you can find someone trained by Tracy Walton  http://www.tracywalton.com/

  • momand2kids
    momand2kids Member Posts: 118
    edited May 2012
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    Hi

    I am a DFCI patient as well-- and my oncotype suggested PR-... although my pathology had it as +.  My onc did not think it was relevant and treated the ER+--we talk about this at every appt ( 6 months apart) and will probably talk about it again next week--- At one point, she did say they just did not know--- but she still thinks the ER+ was the more important factor. 

  • nancyhb
    nancyhb Member Posts: 235
    edited May 2012
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    I came across this thread and am hoping you can help me sort out my "true" diagnosis.

    I have a strange path (biopsy) report - it's not nearly as extensive as many I have seen here.  No ki67, no real measurement of receptors.  What I have is this:  ER+ (">50%"), PR+ ("~10%"), HER2 equivocal.  Later FISH testing revealed HER2- (1.5).

    My Oncotype score came back at 42.  At that time, the receptor status changed to PR- (3.7, where >=5.5 constitutes a positive score).  Additionally, my ER status came back at 6.6, where >=6.5 constitutes a positive score, so I was .1 above the range for ER-, which would have made me TN?

    Which report do I believe?  Do I consider the initial biopsy report as being ER/PR+ HER2-, or, as I've been thinking for the last five months, am I really ER+/PR- HER2-?  I'm wondering if the shift in PR status might account for the high Onco score, too?  

    Thank you for any light you can shed on this complicated mess.

    Nancy

  • ruthbru
    ruthbru Member Posts: 47,238
    edited May 2012
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    Ask that they rerun the test, and not at the same lab. Preferrably at a big cancer center, such as Mayo.

  • nancyhb
    nancyhb Member Posts: 235
    edited May 2012
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    That's a great idea, Ruth- I'm not sure my insurance company will cover that, but I'll ask my MO about that this week when I see them.  It's just very curious to me that things changed so much between biopsy path and Oncotype test.  I read somewhere (on this thread?) that the initial path report was more reliable than the Onco score, but If that's the case then how do we trust the Onco score?

    Such confusion...and it's simply compounded by chemo brain...

    Thank you!

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    Nancy

    I didn't get ANY data on %, or Ki from my original pathology, and at the time, 5 years ago, Oncotype wasn't doing % either.

    Didn't find out til I asked at oncologist visit re: P status.  Below 10%, I guess is considered negative.

    With ALL you're doing - seems like you've covered ALL the bases.  Surprised you're that high on Oncotype with only a Grade 2, too.

    I have NO NO NADA NONE faith in any blood tests, or most tests anymore.  But that's just me - been thru it with inaccurate blood tests. Honestly, I don't think we can be 100% sure of any test.  Whether it's the technology, or human error, can't say, just know I don't have the faith I used to have in it.  GOOD ONCOLOGIST seems key for me.

  • nancyhb
    nancyhb Member Posts: 235
    edited May 2012
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    Sunflowers:  Thank you for the input.  Since my original path stated my PR was "around" 10%, it makes sense that that could change to a negative under the Onco test.  And yes - even my MO was surprised that my Grade was only 2 (original path - I haven't yet seen anything that indicates that's changed) given my score of 42.  That's a 28% metastatic rate; it drops to somewhere around 18%,  believe, with chemo + tamoxifen. 

    I still wish I had more information, yet I doubt I'd trust its veracity.  And I don't know that more information would necessarily help; this disease has a way of doing whatever it wants, regardless of tests or percentages or anything else.  It just is.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    NancyHB

    Kind of agree with Ruthbru, with the complexity of the information you're dealing with - is there ANY way you can get to a "major cancer center" for a 2nd opinion?  

  • nancyhb
    nancyhb Member Posts: 235
    edited May 2012
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    Sunflowers:  I could certainly try.  I'm going to talk with my MO this week at my final chemo and ask for clarification/guidance, and see what she says.  If I don't get an explanation I like or feel comfortable with, I'll look elsewhere.  I will be meeting with my BS shortly, too, to plan for my port removal, so he might have some insight, too. 
  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    That sounds like a GOOD plan.  And, just gotta tell you how wonderful it is to see your SMILE, and jaunty head scarf.  I still have all the ANOHKI soft, soft cotton I wore, and still wear. http://www.anokhiusa.com/  I wear the "sarongs" as shawls ;-)))
  • nancyhb
    nancyhb Member Posts: 235
    edited May 2012
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    My NP and MO are considering me to be PR- - so they're following the Onco score report rather than the original path report.  They also say that, yes, techincally I'm ER+ (6.6 on a scale where 6.5 or lower is considered ER-) and I'll do Tamoxifen, but she mentioned that I'm so close to being TN they aren't sure what benefit, if any, I'll derive from Tamoxifen.  We shall see, I guess.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited August 2012
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    Hope you get some protection.  Just in case, the pendulum swings to 3N, there's a great resource: http://www.tnbcfoundation.org/
  • nancyhb
    nancyhb Member Posts: 235
    edited May 2012
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    Thank you, Sunflowers.  My high Onco score indicates a very aggressive cancer, which, if I understand correctly, TN is also very aggressive.  I'll do whatever they want me to do for protection - I never want this to come back.
  • momand2kids
    momand2kids Member Posts: 118
    edited May 2012
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    so at my bi annual visit today, I brought up the er/pr issue--I had emailed my onc earlier this week so she had the path reports.

     What started my confusion was the oncotype test which had me at 5.3 on the PR scale when 5.5 was the postive cut off....... I only noticed this probably 2 years after treatment.

    Anyway, bottom line was that my original biopsy had me at ER+ and PR" low".  My surgical pathology has ER/PR+ no percentages-the hospital does not use them and the re-read at the Cancer center has them at ER/PR+ .. so 2 out of 3--and of course, the slice they sent to Oncotype could have been slightly different.

    Treatment is long over, she would not have treated me differently even if the PR was -   she reiterated that ER was the driver-although acknowledged that there is still alot unkown

    On the upside, I get to go off lupron this summer to see if I am officially in menopause!!!! I could not be more thrlled.  Had my annual MRI-hopefully all is well there too. 

  • beau
    beau Member Posts: 149
    edited May 2012
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    Hi Nancy,

    I just wanted you to know that most oncologists are quite familiar with patients seeking a second opinion. as Sunflower noted, get one at a major cancer center - they review everything from the bottom up - retest biopsy sample, negative node diagnosis, etc. when I had a second opinion, they re-tested all my bioligical stuff on the actual slides. In my case, I was very comforted to have everything re-confirmed. I ended up liking the second onc more too, so I switched to him after chemo,etc.

    All in all, sounds like your onc is right - they just don't know enough about the significance of PR -., etc.

    I wish you well! Beau

  • SleeplessIn
    SleeplessIn Member Posts: 10
    edited May 2012
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    Nancy,

    I believe it is the path report that is more accurate when it comes to ER/PR expression and accuracy. It actually appears to be not that uncommon for it to be different from a person's path report (mine was also). Apparently the receptor expression result from the Oncotype is just a "bi-product" of the whole test, and therefore different You can actually call them (the folks at Genomic Health), and they can explain it in detail.

  • doxie
    doxie Member Posts: 700
    edited May 2012
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    I agree with Sleepless.  The negative ER and PR people are getting from the Oncotype, except in perhaps very rare cases, does not mean that your original path report was wrong.  It only means that the ER/PR is so weak or such a low % that it figures into the calculations for the Recurrance Score as a negative.  

    Say hypothetically that a 50% ER+ is a 6.6, but a 45% ER+ is a 6.4.  The 6.6 is positive on their scale and the ER will be reported as such.  The 6.4 is negative and will be reported as such.  This doesn't mean that if you have the 6.4 your ER in your path report is suddenly wrong, it just means that for the Oncotype calculations for Recurrance Score, your negative ER or PR by their formula is not helping you get a lower recurrance score.  (Confusingly, the lower your HER2 score is the lower your Oncotype score will be.  This is a good thing.)

    A disclaimer!  The 50%/45% in relationship to the 6.6/6.4 is fictitious.  I made it up to provide a hypothetical example.  Please, please, please, no one quote this as fact!  Hopefully this helps you understand some of the discrepancy between the pathology reports and oncotype reports.  

    I have PR+, but on the Oncotype report, it was listed as a negative.  But its degree of negativity is in direct coorelation with the degree of positivity and staining on the original pathology report.  

    I think seeing if there is a difference in the HER2 Score is really important, whether you are still negative, equivocal or positive, because this impacts your treatment plan greatly, whether or not to receive herceptin.  

  • RaychlD
    RaychlD Member Posts: 3
    edited July 2012
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    Hi. Hoping to get something going again here. I'm also in this sub type and find Drs dodging the pr- questions. I'm thinking they just don't know. Starting Temox but thinking since I'm ten years premenopausal, there's gotta be something more I can do to lower my estrogen or shut it down. Frustrating to say the least

    Raychl

  • pebee
    pebee Member Posts: 96
    edited September 2012
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    Bump for a newbie

  • ruthbru
    ruthbru Member Posts: 47,238
    edited September 2012
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    bump

  • Hildy910
    Hildy910 Member Posts: 227
    edited November 2012
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    I agree about the lowering of estrogen other than tamoxifen.

    There's always an oopherectomy, although that's drastic. 

     I am ER++, and PR neutral/maybe a plus if you squint. The Onc is treating it as if its PR+, but I'm skeptical. I didn't realize that the PR- was a big deal until I started reading this thread, in fact...

  • frankp
    frankp Member Posts: 2
    edited November 2012
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    I think you might find benefit from serum HER2 monitoring. Not commonly used, but sometimes helpful even when tissue test was negative. You can read about this at www.labtestsonline.com and much more detail at www.hertestonline.com