TNBC Survival Rates and questions

Options
MonikaV
MonikaV Member Posts: 201
edited June 2014 in Triple-Negative Breast Cancer

        Last February I was diagnosed with TNBC and was positive for BRCA1. Since then I had a Lumpectomy and 4 treatments of AC and I will have 4 more of Taxol. Everything I have been reading is so discouraging.... Since everything happened so fast and I really did not know anything about my Oncologist, I decided to go get 3 other doctors opinion. Two out of  3 recommended the removal of both breasts and ovaries just in case because I am  BRCA1 positive.One Doctor said she understands the trauma of mastectomy and she said we could monitor it, and if goes to the other breast we can deal with it then.  Now I am more confused than ever.... I need to make a decision within a month, because if choose to keep the breast  i will have to go through radiation and if I remove it I will not.  I am 39 mother of two teenagers and happily married.I am confused and scared.  I want to know if there are any survivors past 5 years out there. I want to know if you had a mastectomy or lumpectomy. What kind of treatment you received?

Thanks , Monika

· Share on FacebookShare on Twitter

Comments

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited June 2010

    MinikaV - hi, I had a lumpectomy...Taxotere/Cytoxan and radiation. You might want to also check out the thread entitled "Calling all TNS". It's a great new thread where many of the triple negative women post regularly to stay connected.  I think you'll get a lot of support there.

    Sherri 

    · Share on FacebookShare on Twitter
  • MonikaV
    MonikaV Member Posts: 201
    edited June 2010

    Thank you Sherri

    · Share on FacebookShare on Twitter
  • living4today
    living4today Member Posts: 215
    edited June 2010

    Monika,

    Just curious, have you talked with a genetics counselor? 

    · Share on FacebookShare on Twitter
  • Issymom
    Issymom Member Posts: 264
    edited June 2010

    Monika - I am 6 weeks out from chemo (DD A/C x4 then DD Taxol x 4).  I was diagnosed with TNBC and then found out to my surprise that I was BRCA1+ like you.  Before the BRCA testing, I was going to have a lumpectomy.  After thinking about, I just couldn't imagine going in every 6 months for the MRI.  The roller coaster would be difficult so after meeting with a PS and seeing what I could look like in the end, I chose a Bi-lat Mx.  I really don't regret that decision.  I had delayed reconstruction and won't start that until the fall.  I am scheduled to have my ovaries removed (hysterectomy) on Friday.  I met with a genetic counselor and he said that my breasts were my decision but the ovaries HAD to come out.  If you are done having kids, then it really is the safest thing to do.  The screening for Ovarian cancer is not good.  The genetic counselor told my sister (who is also BRCA1+) that having her ovaries removed would decrease her risk of BC because she wouldn't be exposed to Estrogen as long as other women.  My sister is going to have her ovaries removed but go on surveillance for BC for now (she hasn't had cancer).

    Good luck with your decision and your treatment.  Let me know if there is anything I can help you with.

    · Share on FacebookShare on Twitter
  • kittycat
    kittycat Member Posts: 2,144
    edited June 2010

    I have been diagnosed with breast cancer twice.  I have TNC and I'm BRCA1+.  I had a bilateral mastectomy and reconstruction last year.  I was supposed to get my ovaries remvoved last month, but found a new primary breast cancer.  I am one of those rare people who would get cancer again after a bmx.  I absolutely don't regret getting a bmx.  I wanted to reduce my chances of breast cancer to the smallest amount. Now I have to get chemo and radiation since the new cancer is invasive and had lymphatic components (it was not in my nodes though). 

    · Share on FacebookShare on Twitter
  • MonikaV
    MonikaV Member Posts: 201
    edited June 2010

    No , but the doctor explained to me.

    · Share on FacebookShare on Twitter
  • katkel
    katkel Member Posts: 28
    edited June 2010

    Hi Monika!  I am also BRCA1 positive.  I chose to have both breasts removed and a full hysterectomy.  I have never regretted my decision.   I had dose dense AC and Taxol.  I was also on a clinical trial of Avastin for a year.  I had radiation, and DIEP flap reconstruction.  It will be 4 years in July.  I am doing GREAT and my life has returned to normal. Because of having such a large tumor (7cm) and 3 lymph nodes, along with a VERY agressive cancer- I (and my Doctors) believe I have beaten this thing!!  Smile   Good luck with your decision and please let me know if you have any other questions.

    Hugs,

    Kathy   

    · Share on FacebookShare on Twitter
  • MonikaV
    MonikaV Member Posts: 201
    edited June 2010

     Thank you so much for sharing your story with me. Smile I will keep you posted.

    Monika

    · Share on FacebookShare on Twitter
  • cinnamonrocket
    cinnamonrocket Member Posts: 27
    edited June 2010

    Hi MonicaV

    I am triple negative, stage 3b, diagnosed at age 39 and will be five years in remission this August. I had chemo first to shrink my large 8 cm tumour and even though it shrank to under 1 cm it was still recommended I have a mastectomy only beause of the original size. I think you need to go with whatever surgrey makes you feel the most comfortable.There is lots of hope.Good luck.

    Cinnamon Rocket

    · Share on FacebookShare on Twitter
  • HairSprayMom
    HairSprayMom Member Posts: 251
    edited June 2010

    Hey I am TNBC Stage IIIb and am 2 yrs 8 months out. I had a bilateral because of the agressive nature of TNBC plus mine was metaplastic also. WTF? I was 37 at DX with 2 teenagers and an 18 month old. I had a bilateral Modified Radical on the cancer side. My tumor was in the chest wall so I had quite a bit of muscle removed as well! You finally have to get to the point where you QUIT looking at stats and decide to live every day to the fullest as it comes at ya! The stats look horrible, but I refuse to live my life by stats! I am an individual, not a number in a study, so I don't think they know crap about me! I have way too many kids and stuff to do to worry every day. As you get farther and farther away from that DX day I PROMISE IT GETS EASIER! Hang in there and feel the GOOD VIBES headed at all of you from Bama!

     XOXOXO,

    Regina

    · Share on FacebookShare on Twitter
  • MonikaV
    MonikaV Member Posts: 201
    edited June 2010
    Thanks ReginaSmile
    · Share on FacebookShare on Twitter
  • HairSprayMom
    HairSprayMom Member Posts: 251
    edited June 2010

    Any Time MonikaV! You keep your head high and just roll on!

    XOXO

    · Share on FacebookShare on Twitter
  • tibet
    tibet Member Posts: 545
    edited July 2010

    hi MonikaV

    Have you decided which way to go? Whatever the decision you make, it will be the right for you.

    · Share on FacebookShare on Twitter

Categories