Triple Negative ?

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pcollins
pcollins Member Posts: 26
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I was just told I am HER2Neu negative after being evaluated for a Herceptin study for DCIS.  Now I have been told that I am Triple Negative.  Can anyone tell me what that means going forward.  Just began the 3 week + boost Rad therapy and will see my MO in a few weeks to discuss the next steps.  Would like to be prepared. 

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2012

    Hi, there ~ Since you haven't had any responses, I thought I'd at least stop and bump your thread for you.  If you don't get some responses here, you might want to try re-posting your question in the TN Forum (click on Forum Index above and scroll down to find it.)  

    I'm not TN, but I know with invasive TNBC is critically important to be working with docs who are very experienced with TNBC, which, unfortunately, many docs just aren't.  I have a feeling that TNDICS probably isn't any different, especially since hormonals won't be on your list of defenses.  If I was in your situation, I would absolutely want input from a major cancer center -- just to be sure they're up on the latest everything!    (((Hugs))) and good luck!    Deanna

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  • AlohaGirl
    AlohaGirl Member Posts: 213
    edited January 2012

    I'm sorry, I don't really know, pcollins.  I do know that my MO said that he wouldn't prescribe Tamoxifen if my DCIS were ER-, but that he would if it were even very slightly positive (it turned out to be positive).  Sorry I can't be of more assistance.  Hopefully someone will come along who is more helpful.  In the meantime, good luck with rads!  My experience with them wasn't too bad, hopefully yours will be the same!

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  • Iz_and_Lys_Mum
    Iz_and_Lys_Mum Member Posts: 126
    edited January 2012

    Sorry, i actually dont know what mine was (its a question i need to go back and ask) but thought id give this a bump for you

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited January 2012

    Please look up past posts from a lady on here named Beesie. She has written so much information on the Her status of DCIS, as well as just about anything you can think of. There was just a recent discussion on here about DCIS and her positivity. In fact, I think on such discussion was under one thread I created called DCIS and Chemo under the DCIS forum. But look up Beesie's posts. You will find lots of good information.

    All I know is that I think being hormone negative and grade 3 makes your DCIS more aggressive than lower grades. 

    If you don't know how to look up Beesie's past posts, let us know, we can tell you.

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  • gillyone
    gillyone Member Posts: 1,727
    edited January 2012

    Can't really help you. As suggested above, post in the TN forum. But I am struggling to think of anyone who is TN with DCIS. But if you post there, someone will help. The only thing I can say for sure is that TNs tend to be treated aggressively as TNs usually have fast growing tumors.

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  • pcollins
    pcollins Member Posts: 26
    edited February 2012

    Thanks to all of you who answered and gave me a "bump".  I am truly amazed by all of your caring in so many ways.  I went to the TN forum but unfortunately did not find my answers; however, I have an appt with my MO and so will ask him.  Another question please:  I went for my Remicade infustion (for rheumatoid arthritis) today and did not know not to allow a blood pressure check in the "surgery" arm.  The nurse took my blood pressure on the left arm and then my friend who is also a nurse and goes with me to the Remicade, said not to allow that - ever.  I have some pain tonight under my L. arm near where they took the nodes and further down towards the lumpectomy incision.  Does anyone know if I should be concerned suffieciently to let the Breast Surgeon know about my pain?  I am taking celebrex and will ice it down - don't think this can hurt any.  Not too sure if this is the right discussion group but thought I would start here.  thanks again and blessings to you all,

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  • Karen3
    Karen3 Member Posts: 307
    edited February 2012

    Hi pcollins

    I was diagnosed with DCIS triple neg in Oct 2011 (it didn't show up on ANY scans!). The DCIS was grade 3 and 4cm. I had IDC triple neg two years ago in my other breast so this new cancer is a contralateral BC (cancer in other breast). TN cancers are also associated with BRCA mutations and I have a BRCA 1 mutation of 'unknown significance' but my oncologist has said that I should consider myself as BRCA1 + as I fit the profile so well. Anyway, I have learnt so much about TN cancer over the last two years so if you still have questions then please feel free to PM me.

    Karen X

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  • onvacation
    onvacation Member Posts: 1,344
    edited February 2012

    Hi there - according to my pathology report it shows I'm triple negative, though this wasn't told to me by my surgeon.  He didnt' really tell me much other than it wasn't the hormone kind.  I had a lumpectomy Jan 30th after a repeat mamogram and ultra sound.  Seems I get most of my info on the internet, which I find strange!  I have a body scan Monday so maybe I will find out more after that.  I don't have an oncologist yet, I assume that is the next step!

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  • onvacation
    onvacation Member Posts: 1,344
    edited March 2012

    Hi there - well it was confirmed that I do have triple negative and will start chemo in a couple weeks followed by radiation.  I am glad I took the time to do my own research before my first oncology appointment, maybe it helped me take the news better and really listen to what he was telling me rather than freaking out.  The freaking out came later ! LOL  I brought a friend with me who was an excellent note taker and glad she came with me.

    Hope everyone is enjoying the day. 

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