It's official, I'm triple neg

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donnaakadj
donnaakadj Member Posts: 9
It's official, I'm triple neg

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  • donnaakadj
    donnaakadj Member Posts: 9
    edited May 2008

    How many have had their ER,PR & H2 status change?  When I was dx in 1990, I was ER & PR+.  In 1999, with bone mets, I was ER&PR and HER2+.  Now in Feb 2008, I had a malignant plueral effusion and all the results (from 3 labs) confirm that I'm triple neg.  I don't know how this happens.  Can anyone shed some light on this?

    Would appreciate any advice/suggestions

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

    Well, no.  I don't know why this happens.  I would ask the onc, next time you see him. 

    Some other women will be along soon, Beesie is our resident fact finder, I'll see if I can find her.

    Gentle hugs, Shirlann

  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    When I was diagnosed last March with IDC, it was a triple neg. This March I was diagnosed with a new primary, DCIS, that was ER+/PR-. My Onc said that every Cancer can be different, even in the same person...

    Linda

  • cdean
    cdean Member Posts: 50
    edited May 2008

    Hi Ladies,

    I have just found that I am triple neg.  Is this a good thing?

  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited May 2008

    Offical today- I'm now Triple negative.

    Jan '08 was Dx with HER2/neu 3+, I've been treated with TCH x3. I'll complete one more treatment of TC, minis the Herceptin (I've received $15,000 worth to date). Was misdiagnosed because they didn't do a FISH test on my biopsy and tumor.

    After my last treatment of TC, I'll start 4 rounds of Adramycin & Cytoxan. Now sure how safe I feel starting a new chemo treatment plan.

    All this because of careless DX and testing. It's scary!

    Thank God I asked to be seen by Dana Faber in Boston on a secound opinion.

    Has anyone else had a similar experience?

  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited May 2008

    Offical today- I'm now Triple negative.

    Jan '08 was Dx with HER2/neu 3+, I've been treated with TCH x3. I'll complete one more treatment of TC, minis the Herceptin (I've received $15,000 worth to date). Was misdiagnosed because they didn't do a FISH test on my biopsy and tumor.

    After my last treatment of TC, I'll start 4 rounds of Adramycin & Cytoxan. Not sure how safe I feel starting a new chemo treatment plan.

    All this because of careless DX and testing. It's scary!

    Thank God I asked to be seen by Dana Faber in Boston on a second opinion.

    Has anyone else had a similar experience?

  • twink
    twink Member Posts: 1,574
    edited May 2008

    Welcome to the club Suzanne.  It is scary to think of what kind of havoc mis-dx can do.  I can't say that I was mis-dx'd but I did have a lab mess up on the needle biopsy results.  They came back negative on both breasts.  Turns out they'd tested the right breast tissue twice. The BC was in the left.  Thankful for my BS' diligence.  It's good to find a medical team you can trust.

  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited May 2008

    Now that I have the Triple Negative Dx, and I'm no longer Her2/neu 3+ they have a new treatment plan for me. I've had 3 TCH Chemo treatments, my forth will be next Friday- this one without Herceptin. They want me to then start a 12 week course of Adramycin/Cytoxon. Can't believe I'm in for another course of Chemo. I'm scared and angry. All I want is good medical treatment and to be safe. Guess I have to go for a 2nd opinion on this second round of Chemo they want to give me.

    Can't wait for the sun to shine and once again warm my heart.

  • twink
    twink Member Posts: 1,574
    edited May 2008

    Hang in there Suzanne. Better to know now than later or never.  Having your Tx adjusted is a good thing albeit not a great prospect in some ways. Nobody wants more chemo....well, hang-on, I did.  More chemo meant (means) killing those little feckers.... cancer be gone!@!

  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited May 2008

    Hi Suzanne,  I have been following your posts to learn what the final result was on your receptor status.  I can appreciate your frustration about all this ... it is scary to think of the errors that are made that are never caught.  At least, through your diligence in going for the second opinion, you uncovered all this which is so important for you.  On the bright side, it is very good that you found out now.  What if you had never known you were triple negative and just continued on with the herceptin treatment thinking it was helping you??!!  You are now getting the best possible treatment for your case but I know it must be hard to face more (and different) chemo.  I wish you all the best and keep posting because you will get great support here.  Take care!

  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited June 2008

    Lastest update: My Tumor slides have now come back Triple Negative, but we're still waiting for the third FISH testing results of my Lymph Node, testing is being done at the Mayo Clinic. The preliminary Lymp Node results seem to be Heterogenous (showing both Negative and Positive HER2/neu). The waiting continues- the hardest part of all this.

    I only have till June 27 to get another opinion on the second course of Chemo (scheduled for June 27), but can't go for the opinion until all testing is complete. I'm already 3 months late starting the proper Chemo for Triple Negative.

    Any suggestions?

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

    Honey, I wouldn't worry too much about the time frame.  You can only do the best you can.  The rest is out of your hands.  I don't personally think time is enormously important in this whole ugly journey.

    Gentle hugs, Shirlann  Triple Neg for 9 years and still NED

  • DOUGHY100
    DOUGHY100 Member Posts: 20
    edited June 2008

    My first thought is to start the A/C on 6/27, and continue with the

    2nd opinion on the A/C. My confidence with my Onc. is shot. She is the one that missed the correct Dx. She is the only game in town, I thought with my visit to Dana Faber in Boston things would of been cleared up but now things are just more convoluted. My visist to Dana Faber was 5/14 and there still isn't a written report back.

    1st thing I must do is have another MUGA scan ( I've completed 3 TCH & 1 TC) then start the 4 A/C. I must let all the pathologists get there final reports in. Then find an Onc. (maybe Beth Israel) to pull all the info together for my final Dx.

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