My sister and I, TNBC

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Armecia
Armecia Member Posts: 28
edited January 2017 in Triple-Negative Breast Cancer

In the last weeks, both my sister and I have been diagnosed with invasive ductal TNBC. I have a small tumor in each breast, 8mm & 14mm. Sister's is slightly larger. We each had BC previously, both estrogen pos. years ago. Our mom had BC 35+ yrs ago and is fine still. Sis & I are waiting results of the genetic panel.

My plans-

  • Consult with MO prior to surgery about possible trials
  • Here's my plan: a bilateral mastectomy on 12/7 w/out reconstruction;
  • Get a 2nd opinion from Lisa Carey at Chapel Hill as to chemo regime
It is all a bit overwhelming. Any coaching on my plans or situation
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  • Rayna_666
    Rayna_666 Member Posts: 24
    edited November 2016

    Wow. I also have triple negative idc. I was diagnosed in April. My sister was diagnosed in January but she is HER2 positive. We are only 33 and 30 years old. It has blown our doctor's minds. We both had neoadjuvant chemo (AC +T) and we both had bilateral mastectomies with tissue expander placement. I am being recommended to have radiation therapy as I had lymph node involvement. She didn't so she doesn't need radiation. We are both BRCA 1 positive, but still, both our oncologists and surgeons said it is unheard of for two sisters our age to develop breast cancer at the same time...

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  • Armecia
    Armecia Member Posts: 28
    edited November 2016

    Rayna, did they consider adding a platin to your chemo? We don't have our genetics results yet but I have an aunt and her daughter that have a BRAC mutation. If I have it to, I expect ACT+platin. My consult in Chapel Hill is next week so I'll see what they recommend.

    You two are sure young. My sis and I are both near 60 yrs of age. But we've both had BC yrs ago (estrogen +). Of course our Mom is beside herself

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  • Rayna_666
    Rayna_666 Member Posts: 24
    edited November 2016

    Yes. If the AC+T hadn't worked so well, my oncologist was going to give me either carboplatin or cisplatin. Apparently they are very effective in triple negative breast cancer and looks promising if you also have the BRCA 1 mutation.

    Hope all goes well for you and your sister.

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  • Rebekah77
    Rebekah77 Member Posts: 21
    edited December 2016

    Hey Ladies!

    I wish you all the best in your Journys! My sister was Diagnosed with Ovarian Cancer at 40 (this summer). There is no known history in our family of Cancer, other than a grandfather who died of Bowel Cancer in his 80's. So I was not concerned at all that i would be at risk. They did genetic testing on my sister (due to young age at diagnosis) She tested positive for BRCA1!! I had never heard of this but knew i had a 50% chance of having it too! I saw my Dr. Still waiting to find out when i can see a Genetic Counselor. I went for a mammo, they called me back for further look at left breast, mammo and ultrasound. I'm told I have very Cystic Breasts and they are Dense. I'm 39 so it is fairly common. I am worried about developing either cancer. I hope I can get Genetic testing done soon so I can be proactive and decrease my risks in the future if i too am BRCA 1 positve. I also worry about my 4 kids, 3 boys and 1 girl.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Hi Rebekah-

    We're sorry to hear about your sister, and for the worry you're experiencing in regards to your own genetic testing. We know it can be a stressful time! You might want to check out our forum for members at higher than average risk of breast cancer, lots of good info there on testing, how to proceed if you're a carrier, and some treatment options available to those who wish to pursue them: https://community.breastcancer.org/forum/47.

    Please keep us posted on when/if you are tested!

    The Mods

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  • Armecia
    Armecia Member Posts: 28
    edited December 2016

    An update: sister and I are positive for a BRCA-2 mutation. Thank God her daughter, a young mother is negative.

    I did get a consult at UNC and had my surgery there last week. Just got my pathology results and was surprised that the tumor that appeared to be 1.4 cm a month earlier was just over 2cm and that I had 1 lymph node that was cancerous: extracapsular extension. Not good. I'm kinda shocked because it grew so fast and because there was so much cancer in a node when they could see nothing in the nodes a month before via ultrasound. I have to go back and get more nodes removed

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  • Rebekah77
    Rebekah77 Member Posts: 21
    edited December 2016

    Wow Armecia,

    Sounds like you and your sister have had quite the journey! I am sorry to hear about your test results, but glad your neice was negative! Be strong! You sound like a fighter!

    I just found out my Dr. never did send the request for genetic testing. He has had my sisters results for weeks already. So the genetic counselor will be calling him to request my referaal, after that it wont take long to get in!

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  • Armecia
    Armecia Member Posts: 28
    edited December 2016

    thanks Rebekah

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  • argynis
    argynis Member Posts: 123
    edited January 2017

    My sister and I were also both diagnosed almost at the same time this year aged 30 and 32. We were both on half-year monitoring protocols inlcuding US and MRI's, but it did not help us avoid chemo as the tumour grew so fast.

    I also had TN IDC in my right breast aged 28 and now was diagnosed with HER2+ IDC in my left breast... I wish I would have chosen a bilateral mastectomy at that time.

    My mom was diagnosed in late 2015 - we had 3 cases of bc in our family within a year.

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