Retested -- Not Triple Negative?!

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defeatbc
defeatbc Member Posts: 53
edited September 2015 in Triple-Negative Breast Cancer

Hi Ladies.

Since my first biopsy in March, I was convinced I was triple-negative because my progesterone receptors were low. Now, I'm in quite a shock.

Recently, my oncologist had my post-mastectomy samples retested with a FISH test (on the HER2 status) and a hormone receptor test.  Here are the results:

Left Breast IDC   ER- / PR+ (1-4%) / HER2-

Right Breast DCIS   ER+ (1-4%) / PR+ (1-4%) / HER2- 

My Onc. considers low hormone expressors to be positive, and will be placing me on Tamoxifen after chemo for 5 years.  He is quite convinced that low expressors yield benefits from that therapy, even if the benefits arn't as great as high expressors. 

He showed a lot of enthusiasm for me from the new test results.  When I asked him if I'm still considered Triple Negative, he said, "No, not at all."

Ladies, what are your thoughts on this?  Have I lost my membership in the "Tri-Neg Sisterhood"?

I still feel like a Tri-Neg.  I plan to continue being aggressive with my treatment, exercise, eat a low-fat diet, be very vigilent on recurrences, etc.  All the things Tri-Negs are advised to do.  I was also, looking forward to having a big NED party in 3 years, as that is a big milestone for Tri-Negs.... *sigh*....

What do you think?  Are low expressors triple negative?

Thanks gals  -- defeatbc 

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Comments

  • Gitane
    Gitane Member Posts: 1,885
    edited July 2008

    I would love to hear the answer to the questions you asked.  Are very low expressors triple neg?  I am a low expressor, too.  My ER is very low, but mildly positive, and my PR is negative, although Oncotype DX uses a different cut off that would make me positive, but by so little it doesn't matter,  MD Anderson's cut off calls it negative.  I'm taking Femara, but who knows it it's doing any good.  Anyway,  I'll be checking back to see what people know about this.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2008

    I hope you don't leave are little group completely.Smile  But this is good news.  You have a backup plan.  I see were "Watson" just got tested again and her liver biopsy came back Her2 positive I think she said.  I had 8 biopsy and it always the same old stuff...I'm jealous.

     Flalady

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  • defeatbc
    defeatbc Member Posts: 53
    edited July 2008

    Hi Ladies.

    Thanks again for making me feel welcome in the tri-neg group.

    I am very curious to see if there are any other "low expressors" for hormone receptors, and like to know if any tri-negs or "borderline tri-negs" are on Tamoxifen, Femara, or the likes.

    Is there a possiblity that some of us have mixed tumors?  Some cancer cells being receptor positive and some being receptor negative? 

    -- defeatbc

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2008

    defeatbc,

    I had 7 or 8 biopsies to check receptor's.  My doctor's pray that I'm Her2 or anything else.  They want to give me Hercepton because I'm Her++, but the insurance companies will not let them.  While at MD Anderson they talked about it too, but would not get of the fence and do it.  They even talk about doing the Her2 vaccine and then backed out. My local doctor feel's I am Her2 but can not find enough expression to satisfy the insurance company.  And this is a doctor who does all the new chemo drug before they go to trials?

    I would love to be anything but TN right now.

    Flalady

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  • Wink333
    Wink333 Member Posts: 143
    edited July 2008

    Okay ladies, all this talk about low expressor's is scaring me. My report doesn't give % of expression. All it says is negative. How do we find out if we were truly negative or do they only put % when there is any at all.  I guess I should call my onc and get her to contact the location that did my path report, is that right? Does anyone know how a cancer can change receptors? Has it really changed or is it a new cancer? Is TN like a bacteria or virus that mutates to survive after exposure to antibiotics or drugs? Has anyone had a health professional explain receptor changes?

    Thanks for any info,

    Wink

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  • Jacquio
    Jacquio Member Posts: 39
    edited July 2008

    Hi, there, everyone.   I'm a trip-neg, just finished radiation on 6/23, and finished 4 rounds dose dense A/C and 4 of Taxol every other week on April 4.

    I didn't know they could retest surgical samples this far after the surgery? Do they keep them?   ALSO, what is the start date for the three years out for NED?  NED means No Evidence of ...???

    I'm learning more on this site than I've heard from my docs, but I think they figure as much, and don't necessarily bring topics up unless we ask.  No one told me I was trip-neg. I never heard the term until after I finished chemo.  I'm 53, and was still premeno when I started chemo in December. Obviously, no longer pre-meno!!!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2008

    Wink,

    You can ask your doctor for a copy of your path report.  They should have done a FISH test to verify your Her2 status. (two different reports) I was told by my doctor that receptor status change because your treatment killed out your original receptor and the old cells left behind muted into something else.  Survival of the strongest I guess you could say. Triple negative has a reputation of being able to hide from treatment by changing it's cellular make up.  In other word you become chemo resisitance.  Guess what? that's me. 

    Flalady

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited July 2008

    Well, we may not let you go!  Just try!   Kidding of course, but we hate to lose a sister, but still, we are all glad for good news.

    NED is:  No Evidence of Disease 

    Hugs, Shirlann 

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  • GeorgiaNiece
    GeorgiaNiece Member Posts: 9
    edited August 2008

    My aunt is Estrogen Receptor -- Variable weak positivity; Progesterone Receptor -- Negative; HER2 -- Negative.  Her doctor has declared her triple negative.  What about the "variable weak positivity" for estrogen receptor?  Any chance this could be considered positive??  Thank you! 

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  • Deedee79
    Deedee79 Member Posts: 52
    edited August 2008

    Hi All!

    I had a lumpectomy a couple of weeks ago. I had 19 lymph nodes removed. I am triple-negative and my surgeon is having the tests redone. I see my oncologist on the 19th and he will have the results of the second test. I can see I'm going to need to change my way of eating and exercising. You all have so much knowledge. I'm in a fog!!! I'm 79 in oct. and have been well.It's so nice to have a place to compare notes and get knowledge. Hugs,Deedee

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  • Jacquio
    Jacquio Member Posts: 39
    edited August 2008

    Thanks, all. I do have my path report, but the term trip-neg was never mentioned. I put two and two together, or in this case three negatives, and then found the term and this discussion board.  So, glad (????) to be here where I know I'm not alone. Now that treatment is over, I'm sort of feeling that in limbo feeling.  Sort of jealous that I don't have to take tamoxifen or something else just so I feel like something is still being done.  My docs don't take a bunch of scans. I go every 6 months now for checkups and annual mamm. I am scared about that a bit because my surgery (part. mast) was in November 07, and my first mammogram since then is next week. Expecting it to hurt...blah!

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  • dreama68
    dreama68 Member Posts: 1
    edited September 2015

    My daughter was diagnosed triple negative, tested twice, and always totally TNBC in 2012. Had a lumpectomy, later breast reduction and

    cleaning the breast area of cancer of lymph node involvement, taxol resistant, but adrimiacyn cleaned out all the cancer in 2012. Followed with

    12 weeks of radiation at MD Anderson. However, just like TNBC had recurrence in 2015 with lesions both sides of lungs and liver lesions

    Ixempra and Xeloda were tried. Her December biopsy 2015 was estrogen positive, 70% weak. So then doctor told her she wasn't TNBC
    but estrogen positive and so even a tamoxifen trial was considered. All other experts however, felt like it was acting just like TNBC so we

    had slide of biopsy, second opinion, City of Hope. They found only triple negative breast cancer. The lung biopsy was the source

    but no liver biopsy was ever done. She died in April of 2015 because no chemo helped and she was never treated as having TNBC.

    What is going wrong here? How does TNBC mutate and then young women lose access to TNBC trials. Please help me understand.

    I am twice with cancer myself, first estrogen then HER2 and treated with Herceptin. We are not positive for any BRICA or Bart

    and really the Foundations test of my daughter were not significant for any available clinical trials.

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

    Dear Dream86, We are so very sorry for the loss of your daughter. We are sure that the difficulties with her diagnoses must add to your grief. Please consider connecting here as a cancer survivor yourself for continued support and information. The Mods

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