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Podcast: Hope After a Triple-Negative Diagnosis

moderators
moderators Posts: 7,659

Thought you all might be interested in this podcast from Breastcancer.org: Hope After a Triple-Negative Breast Cancer Diagnosis

Hope you find this helpful!

-- The Mods

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Comments

  • numbie
    numbie Member Posts: 1
    edited September 2011

    Thanks for this post.  I needed to see something like this today!

  • squidwitch42
    squidwitch42 Member Posts: 1,467
    edited September 2011

    ditto

  • maggi
    maggi Member Posts: 1
    edited October 2011

    I feel like I just woke from a bad dream everthing moving so fast. Surgery  and now chemo getting ready for second chemo. I am in a daze.

  • Maya847
    Maya847 Member Posts: 7
    edited October 2011

    Thanks for posting this!

  • BellaJean
    BellaJean Member Posts: 32
    edited November 2011

    I don't know if I am triple negative or not. I am 1-5% Er positive yet have been told that my tumor is more like a triple negative. They are also wondering if it won't come back ER- from the oncotype test.

    I have a small tumor (1.2cm) no node involvement and clear margins. Now here is the thing that really confuses me. My oncologist told me that the chance of relapse for me is 13% and given such a low relapse risk chemo will not be of much benefit (aroudn 3.6% reduction in risk.) The Tumor Board does not think either Tamaxifin or chemo will be of much benefit, but it is my decision; and I was told it is a dilemma how to treat me. I will be getting radiation. Has anyone had a similar status or lack of treatment suggestions. 

  • lilredpony
    lilredpony Member Posts: 3
    edited December 2011

    I sure hope so!!!  I am very hopefuly since I'm on stage 1V, and adriomycin, and taxol not work. I'm currently on erubulin and prayers.  Definitely need to have some positive vibes as the holidays doesnt help me feel any better, it's pretty bad, i'm sorry

  • mcharl
    mcharl Member Posts: 5
    edited December 2011

    I was dx in 05 and i am still here.  all of you hang on, you can do this.  I had high grade, stage 2 IDC..  I am still ned as of last check-up.  Hugs to all.

  • BDiamond
    BDiamond Member Posts: 1
    edited December 2011

    I am so grateful you posted this.  I am newly diagnosed & this is too scarey.

  • Reality
    Reality Member Posts: 532
    edited December 2011

    Thanks for the post - The truly negative connotation of Triple Negative really hit me when I overheard an RN, who was new to my center, and not onc. trained, comment to the other nurse that it was too bad that I had the "worst case scenario" - my heart just sank when I heard him - 

  • mcharl
    mcharl Member Posts: 5
    edited January 2012
    It is, pick your days and cry, feel sorry for yourself whatever you have to do, but the next day find your attitude and fight.  You can do this.  Hugs.Wink
  • journey4life
    journey4life Member Posts: 223
    edited January 2012

    I experienced a similar reaction when talking to a patient navigator. I got an "Oh" when talking about TNBC. Got an "OH (more pronounced)" when I mentioned BRCA1. It is encouraging to know that we can survive!

    mcharl - you're an inspiration!

  • lilredpony
    lilredpony Member Posts: 3
    edited January 2012

    what amazing stories they really help!

  • mcharl
    mcharl Member Posts: 5
    edited January 2012

    This is why i came back and check in occasionally.  I am not saying i havent had my moments, we all do, but our fighting spirit is what keeps all of us going day after day.  My love, hugs and prayers to all of you always.  Smile

  • mcharl
    mcharl Member Posts: 5
    edited January 2012

    No one, please hear me no one, can say how you will handle cancer or treatment but you.  Nurses should be ashamed to project their own negative reactions onto patients, what hooey.   Hang on, smile at these people and walk away knowing that they are clueless.    Big hug.

  • chumfry
    chumfry Member Posts: 169
    edited January 2012

    I've had TNBC twice and I'll be five years out from the second one this April. Mine was even two separate types of tumor, medullary in 2005 and IDC in 2007. You don't see lots of TN old-timers here on BC.org but that just means they've gone on with their lives.

    At the beginning, you take it one day at a time. Then a week at a time, then a month. Nowadays, I don't even notice when my "cancerversaries" go by. <grin> I'm not saying I wasn't forever changed by BC, but the fear does eventually subside and your real life starts back up.

    --Cindy

  • Gabbi42
    Gabbi42 Member Posts: 6
    edited February 2012

    Thanks for the encouragement

  • anndh
    anndh Member Posts: 2
    edited March 2012

    Thank you, Chumfry--I needed some good hope right now!

  • EllieH7
    EllieH7 Member Posts: 8
    edited March 2012

    Cindy,

    I must agree with you on the time thing. I was dx in May of 2010 with TNBC and I am almost 2 years out now, and there are times I think about it and other days it is far from my mind. Life is good, but God is great. Amen!!

    Ellie

  • dtholden
    dtholden Member Posts: 23
    edited March 2012

    Greetings Everyone.

    I just completed my DIEP free flap surgery a couple of weeks ago and recovery is going well.   My chemo treatments of 4 months prior to my surgery went well with mnimal side effects.   I am feeling very good....walking twice a day, eating super healthy...not taking any meds due to almost no pain...just a tad bit sore at times.  I am simply amazed on how well I am feeling after such a major surgery.  

    Even though I was diagnosed Triple Negative, I feel blessed that things have gone so well and I hold to the belief that I will not have a reoccurrence.  I live in the moment ...enjoy each day to the fullest...I know that I must die one day but it won't be anytime soon :-) 

    You are all strong warriors...and I believe that we will all share a "truimph of spirt" over this adversity once we complete our surgeries, treatments and get on with living and loving our lives!  

    Everyone stay blessed and strong!

    Denise

  • tropixchick
    tropixchick Member Posts: 1
    edited April 2012

    Grateful I read this today.  I was diagnosed in April 2010 and have gone through chemo and radiation.  Most days, I don't even think about it much, but some days (like today), I do and I worry. Thanks for the upbeat blog.

  • moderators
    moderators Posts: 7,659
    edited April 2012

    tropixchick, we're glad to hear the blog post helped to lift your spirits today - and welcome to Breastcancer.org!

    The Mods

  • shirley1946
    shirley1946 Member Posts: 1
    edited April 2012

    I am a new March 18,2012 had a mastecomy left side, and the got the news triple negative, Stage 2a, and then i went and saw my oncologist, very incourageing, no negative, Her2 is 2+ so i do have a chance with a trail, havent heard yet but i am hopeful. Had a port-cath put in my left shoulder and we start ACT chem on April 26,2012, with God's support and my framily and friends, the first day of chemo should be an event, plus maybe the trail (Herseptrmin) bad spelling, sorry, Anyone else, my thoughts are with you, if you dont have a support group, you get one, it helps to be on the positive side of this.

  • gauravbhatia1979
    gauravbhatia1979 Member Posts: 1
    edited April 2012

    My mom has recently been diagnosed with Stage 2a breast cancer. She has undergone Modified Radical Mastectomy. Her Histopathology report says that she has triple negative cancer. Margins and lymph nodes were all negative. Scores were ER = +1, PR = 0, HER2 = 0. What are her chances to fully recover so that this does not recur ? what are the further treatment courses she needs to undertake ?

  • Clowngirl
    Clowngirl Member Posts: 15
    edited April 2012

    I want to post to this thread as I can really use the support right now. I am a triple neg. Getting BMX on June 10th with no reconstruction. I am very concerned about my options. BS says I will need rads and chemo. I won't have any more info until path comes back from BMX.  I'm quite depressed so anything positive that anyone can give me so that I can hold on to hope? 

    Thank you, all.

    Sally 

  • njprn
    njprn Member Posts: 29
    edited April 2012

    I'm grateful to find this blog. I'm newly diagnosed (Jan) and as you all know it has been a wind tunnel since. Just a FYI if anyone is considering options. I enrolled in a trial at Dana Farber in Boston which is chemo before surgery (neoajuvent) for 12 weeks,,followed by surgery (which I still haven't decided on yet), followed by 4 more cycles of chemo (AC) then radiation most likely. The trial drugs are Cisplatin, Taxol and Rad (Everlimus sp??) or placebo.I just finished tx #10 and side effects have been tolerable. I get examined every three weeks and the tumor, about 3cm to start, can't be felt now on exam!! I met another woman in the trial who had similar results. Hopefully this is good news for TN treatment. We need to be positive not negative (sorry for the pun) . Support and best to all........ Nance

  • mb1024
    mb1024 Member Posts: 12
    edited April 2012

    Welcome, Nance, and that's great news!

  • moderators
    moderators Posts: 7,659
    edited April 2012

    Nance, thanks for sharing the great news about your experience with a clinical trial - congratulations!

    gauravbhatia and Clowngirl, you've found a good source of information and support! You can read more medically-reviewed information about Triple Negative Breast Cancer on the main Breastcancer.org site (click to go to the link).

    There is also a very active and helpful forum Triple Negative here in the discussion boards, where you can connect with other members who are experiencing what you are.

    Best wishes!

  • Read2nyt
    Read2nyt Member Posts: 1
    edited May 2012

    Had LCIS on rt side, Ductal carcinoma on the left, and 3/15 lymph nodes affected. Did surgery,chemo, radiation and later herceptin. Have been great, BUT... That was 8 years ago. Now, I am battling a NEW attack on the right. Lobular Carcinoma, 26/26 nodes, and breast cancer cells in my colon. All of this was found thru a fluke, my tumor markers were going up...still nothing shows up on my breast MRI, mammo, sono. We cannot find a primary tumor, but assume there must be one. I am not BRAC 1 or 2 positive, and I have stumped the regional tumor board. Scared out of my mind...just started abraxane, but since no one can find a primary source, I am not purposeful to a trial...what would they measure? Has anyone survived this? Please respond. Thanks a lot.

  • njprn
    njprn Member Posts: 29
    edited May 2012

    I don't know if it has to be measurable. But there was a recent article reporting that a Canadian study made some discoveries regarding TNBC. When I went to research that it led me to another drs review on research being done on TN. He reviewed PARP inhibitors and Cisplatin ( a trial I'm doing) and the Cisplatin showed promise with Taxol. Cisplatin is an old drug but not used on BC as much. There is also research about Tyrosine Kinase inhibitors for TN. Maybe you can ask your onc about it there are drugs you can try.

  • rsinorlando
    rsinorlando Member Posts: 6
    edited May 2012

    I will definately check this out!