triple negative just diagnosed

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marieof3
marieof3 Member Posts: 6

I just got the confirmation today and am pretty much in shock.Anyone out there care to share some info with me ,i'm not sure if what my body is doing is to be expected.this tumor seems to be growing at an alarming rate.I see my surgeon Thurs to schedule the removal of both my breasts.I just can't believe this is happening.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2012

    Marie, welcome to BCO, although we're sorry you had to join us!

    Until other members post with their own experiences with TN, you can read more about triple negative at the main Breastcancer.org site. 

    Ask all the questions you want - you can count on this community for information and support as you work through this.

    The Mods

  • mitymuffin
    mitymuffin Member Posts: 337
    edited March 2012

    Hey Marieof3, feeling shocked is something most of us can identify with!  It sure rocks your world.  I thought I was very healthy (and I was, otherwise.)

    How old are you? Are the doctors suggesting genetic testing to see if you are BRACA 1 or 2 positive? Many of us, including me, had lumpectomies rather than masectomies and unless there is a clear reason for a masectomy, the survival rates on lumpectomy + radiation are just as good as masectomy and the recovery is much easier. That said, there may be definite reasons for a masectomy but be sure you have had the conversation with your doctor.  Assuming you have had that conversation and made your plan accordingly, you will find help from women on this board who have gone through masectomies.

    Your next step will be to get a treatment plan with your oncologist, and you will find many people here to advise and  support you through the treatment. Keep posting, we want to hear from you. 

  • marieof3
    marieof3 Member Posts: 6
    edited March 2012

    thank you,i am 39.i am waiting for the results of the genetic testing ,i do have a family history so we are taking that into account when planning the surgeriesI  woke this morning and the tumor is even bigger still.I hate this waiting game.I am in so much discomfort.

  • Luah
    Luah Member Posts: 1,541
    edited March 2012

    marieof3: Sorry you had to join the club no one wants to join, but there is lots of great information on these boards. Although many/most of us did surgery first, followed by chemo and (sometimes) rads, there are also quite a number of women here who did chemo first, then surgery. This can be a good option for TNs, as chemo is the only systemic treatment available to us (as our tumours are not sensitive to hormone therapies) and it enables the docs to see if the particular chemo regimen is working (shrinking the tumour) and to make adjustments if not. Also, by shrinking larger tumours, neoadjuvent chemo can make a Lx a more feasible option in some cases. It would be worth at least having a conversation with your oncologist about the best timing for chemo in your situation. I wish you well.   

  • thenewme
    thenewme Member Posts: 1,611
    edited March 2012

    Hi Marieof3,

    I'm so sorry you're here.  I was 39 at diagnosis too, and triple negative, and with a really fast-growing IDC tumor.  It sucks - no two ways about it.  

    The good news, though, is that chemo is most effective for rapidly-dividing cells, so it's great for TN tumors.  I had a delay between diagnosis and surgery, about 6 weeks, because of an awful sinus infecton, and I could feel my tumor growing too.  I was frustrated that my doctors pooh-poohed it, saying that it was probably just hematoma from the biopsy or maybe I was just more aware of it or whatever.  As it turns out, though, it really WAS growing that fast!  The ki-67 number is the percentage of cells actively dividing at the time of the test, and mine was 100%.  Lots of TN women have high ki-67, which at least partly explains our high numbers of "interval tumors," or those that seem to appear out of nowhere.

    I share this with you so you know that you're not alone.  The fear, shock, and overwhelm are totally normal.  I'm over 3 years out now and doing fine!  You can do this.  We're here for you.  Ask lots of questions here and with your doctors.  It really does get easier once you have a plan in place and start active treatment.  Hang in there!

  • Hope60
    Hope60 Member Posts: 223
    edited March 2012

    Hi Marieof3 - So sorry you're here. I remember what I terrible shock it was to receive my diagnosis.  It took me quite a while to wrap my head around it.  Try to take a deep breath, if you can, and know that you're not alone.  We are all here for you.  Hang in there!

  • marieof3
    marieof3 Member Posts: 6
    edited March 2012

    Thank you so much,your kind words def help.I spend all day being strong for my little ones and all night crying.I love Neil Young,btw,what a comforting line.Nice choice

  • sandik
    sandik Member Posts: 482
    edited March 2012

    Hang in there Marieof3! I just had my lumpectomy last week, so I'm at the beginning of my journey, not too much further than you. It really does get easier. I do have days that I am not consumed by it all day. 

  • marieof3
    marieof3 Member Posts: 6
    edited March 2012

    Thanks everyone,just had the most trying day dealing with hospitals and financials.I find myself so tired all the time.I am surrounded by many well meaning friends though,so I am lucky.I am still chuckling at the advice of one of my girlfriends,she sais coffee enemas are supposed to help,lol.with what i'm still not sure.

  • thenewme
    thenewme Member Posts: 1,611
    edited March 2012

    Hi Marie,

    How are you feeling?  Hope your day today is better than yesterday.  It is exhausting and overwhelming, to say the least, so try to take it easy on yourself and lean on your friends (but take their coffee advice with a HUGE grain of salt, LOL!)

    Do you have lots of help with your kids, or are they older?  Through all my treatment, my biggest source of fear, frustration, anger, sadness, and of course joy and hope, was my children.  It really meant the world to me that so many people stepped forward to help my kids through it all, although it was sometimes hard on me to feel so dependent on others, so don't hesitate to accept offers to help.  

    Hang in there!

  • syndie60
    syndie60 Member Posts: 1
    edited March 2012

    I have just join the forum, I had join one prior, however, it was for women with stage 4 cancer, someone suggested I look for a forum more suitable for my needs.  So here I am.  I was diagnose with IDCIS, triple negative, no node involvement 1.3 cm tumor left breast only.  I had a bilateral mastectomy on January 26,  2012,  I felt this was best for me I'm a worry wart. At first I was estrogen postive at only 4%.  I had the oncotype test, just received that I was triple negative, the estrogen postive was inaccurate.  Now I'm faced with chosing the right treatment.  I forgot to mention I'm diabetic, high blood pressure.  At first before the triple negative diagnosis, my Onc suggested 4 treatment of TC every three weeks, now he is suggesting 6 treatments every 3 weeks, I've interneted like I think most of us have done, and I'm finding out that the recommended treatment for triple negative is ATC, Adiamycin, Taxatere, Cytotan.  This concerns me because of my diabetes that I have had for the past 8 years.  Is there a high risk for organ damage since I feel my organs are probably compromised with the Diabetes? I know there is a possiblity of heart damage?  So I'm not confident with the treatment I should chose. Any information you can share will start me on the road of peace of mind.

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