BRCA 1 and TNBC - Anyone out there?

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  • Peabrain
    Peabrain Member Posts: 268
    edited July 2015

    howdy,

    Sounds like you're in Davis or outer East Bay. Lots of good medical care in that area.

    Your tumor size must have scared themto get everything moving so fast. I feel like I had to beg to get appointments and then a surgery date. Your chemo starts out the same as mine, but then I switch to Taxotere and Carboplatin for 12 weeks. I got an extra four weeks when my sentinel node and one other were unexpectedly positive. Hard to find info on this regimen.

    Is your Taxol dose dense? Same amount but squished into fewer treatments?

    Does the biotene help with the mouth sore?

    I hope you don't feel bombarded with questions. So much of the info out there seems to include the hormone drug treatments/blockers and no BRCA considerations and it's hard to try to sort out what to expect (considering we all react differently)and how to wrap my Peabrain around it all.

    Wishing you and your family the very best with the BRCA discussions,

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  • Brightsideplease
    Brightsideplease Member Posts: 34
    edited July 2015

    Hi Peabrain,

    I'm in Fairfield, which is 40 min from Davis, love Davis, college towns are fun. I am not doing dose dense, I asked my oncologist, and she said the outcomes would be the same. So I'd rather do it for a longer period of time, and have less bad side effects. I ran out today and got some of the magic mouthwash, the Biotene just wasn't cutting it. Have a good night :)

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  • Peabrain
    Peabrain Member Posts: 268
    edited July 2015

    hello, Bright Side!

    How are you doing? I have one more week to heal from the surgery and then chemo starts.

    My family has started to go through the BRCA testing, still a couple weeks before we get the results. I hope everyone else is negative!!! Definite cliff hanger.

    I hope you are as well as you can be, considering your visits to the chair.

    Hugs.

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  • Peabrain
    Peabrain Member Posts: 268
    edited July 2015

    hello, there!

    Bright side - I am hoping your chemo treatment is going smoothly. Let me know if you get a chance.

    I got good news today. One of my brothers came back BRCA negative! I cried I was so happy. Just one more brother to go.

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  • J3nny4
    J3nny4 Member Posts: 15
    edited August 2015

    Hello :) This is my very first post. I searched for BRCA1 and Triple Negative and this is the first discussion group I found. Thought I'd start here!

    I realize that a lot of medical info about me will show up under my post so I won't go into any details about myself until I see how that works.

    I look forward to meeting those of you going through the same "stuff" as I am so we can share experiences and commiserate!


    Thanks,

    Jenn

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  • sbeddows
    sbeddows Member Posts: 29
    edited August 2015

    Hi all....just found out today that I too am in this club. I am honestly devastated as it seems like one more hit. Everyone seems so strong on here....I have a lymph node positive and am about to do my 2nd neoadjuvant AC.....life is pretty poopy right now :(

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  • anamerty
    anamerty Member Posts: 195
    edited August 2015

    my last BC was tn and I am also brca1,with a vast family history of breast cancer and most of us have the brca1

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  • Nikki1986
    Nikki1986 Member Posts: 21
    edited August 2015

    Hi everyone. I was diagnosed at 28 with TN after i felt lump in L breast. I was shocked to find out I was BRCA 1+ because I had no known family history of any type of cancers. I had a negative sentinel node biopsy and started chemo a few days later. 4 AC then 12 Taxol + 4 carbo mixed in. I had BMX with TE on 7/31 & found out I had a PCR! Best news I'd ever heard. My MO is optimistic because she says that people who are TN with BRCA 1 do better than those with TN without a gene. Hopefully thats true. Very hopeful that I will never have to deal with this again! One big concern is that I have a 4 year old daughter and I hate thinking that one day she could possibly have to deal with this too.

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  • Peabrain
    Peabrain Member Posts: 268
    edited August 2015

    Nikki,

    Any chance you could get the link to the study that your MO referenced? I have never heard that BRCA los do better with triple negs and could use the good news!

    What's a PCR?

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  • Nikki1986
    Nikki1986 Member Posts: 21
    edited August 2015

    Peabrain,

    Here is the link! PCR is pathologic complete response meaning that chemo completely rid my body of cancer. Good luck to you!

    http://ww5.komen.org/Breast-Cancer-News/BRCA1/2-Mu...

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  • Peabrain
    Peabrain Member Posts: 268
    edited August 2015

    thanks for that link! Made me smile.

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  • Dus10
    Dus10 Member Posts: 4
    edited September 2015

    I just "celebrated" my 12 year in August. I just turned 43, and I'm weaning off of estrogen replacement, and well, feeling a little introspective. I'm curious if anyone else has drawn any conclusions between an event and onset.

    I was pregnant at the time of dx, and baby wasn't doing well so I was in ultrasound 3 days a week for 2 months when a very large lump appeared at the bottom of my breast right where the ultrasound handle would be present most of the time. This occured right after I had a screening at the high risk clinic for my brca check up. And all was clear. I realize that ultra sound isn't radiation. But it does heat up tissues I think. Anyway. After that, I have never allowed any X-ray or mri (except during treatment) again. Not even dental x-Rays. I opted out of radiation treatment. It's just a funny feeling I have and just curious if anyone else had thoughts on it.

    Alternatively, I wonder if being super healthy for my pregnancy, taking prenatal supps and no booze or smoking might have contributed to its rapid onset.

    Then of course there's just the fact that tnbc brca is just typically found in younger women, and I'm trying to draw conclusions where none exist.

    I rarely think about when I had cancer. I stopped obsessing about 2 years ago. Damn hormones ;) Your thoughts are appreciated



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  • jennybg
    jennybg Member Posts: 4
    edited April 2016

    Hello! I was diagnosed with TNBC in 2011 at the age of 33. An year later tested positive for BRCA1 founder / 5382ins/ mutation. Mom has ovarian cancer and the same mutation, gradma died at the age of 40 from breast cancer.
    Two months ago this year I had a recurrence in the same left breast and a new cancer in the other breast. What surpised me this time is that the recurrent tumor in the left breast is Er-, Pr-, and HER /3+/ positive, instead of TNBC, like the previous one.Unfortunately the HER2 status can be conferred only by IHC .CISH or FISH are impossible to be done due to bad laboratory fixing of the tumor sample. On the other hand, the tumor on the right breast is triple negative. I find this very perplexing.
    My oncologist said that BRCA1 breast cancers are mostly triple negative, while HER2 possitive BRCA1 cancers are very rare
    /only 2-3 %, if any/.nRight now I should start chemo, but I am not sure about adding Herceptin to it.
    Have any of you ever been diagnosed wirh a BRCA1 hormone receptor negative BRCA1 + BC that is HER2 positive?

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  • Pocketfullofmemories
    Pocketfullofmemories Member Posts: 1
    edited May 2016

    Hi! Newbie here and just soaking in as much info as I can. Diagnosed Feb 3/2016 with BC stage 3a and spread into lymph nodes right breast.

    Started chemo Feb 19 3 rounds of FEC every three weeks followed by 3 rounds of Docetaxel every three weeks. Just did my second round of doxyyesterday.

    I am BRCA 1+, estrogen + but progesterone - and HER2 -

    Anyone else have anything similar? It seems being BRCA1+ usually goes with triple neg. but I am not. Desperate to find someone with similar situation if possible.

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

    Dear Pocketfullofmemories, Welcome to the BCO community. We are glad that you reached out here. If you do get any responses here you may want to start a new topic in this forum. Let us know if you need any help. Stay connected and keep us posted. The Mods

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  • Eschindler
    Eschindler Member Posts: 62
    edited June 2016

    Hi,

    Are any of the folks on this forum willing to talk about the challenges you face related to being BRCA+ with TNBC? For instance, the larger risks of recurrence, lack of targeted therapy, combined with the heriditary nature of the disease, and the psychological effects of all of this? Sometimes it feels like cancer has been my whole life; my grandmother died a year before I was born, my aunt died when I was 22, my mom had a prophylactic hyst at 32, after years of infertility, and I (as you can see) was diagnosed in April 2015. I have a daughter who just turned three, and a son who is five. I am part of lots of support communities, which are so helpful, but it's rare to find folks who understand the ongoing, marathon-like nature of hereditary TNBC.

    Hope you all are well!

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  • JJ62
    JJ62 Member Posts: 65
    edited June 2016

    Almost 6 years out from finishing treatment. Life goes on. It gets easier. Still so grateful for the information, support and stories through this site. Best wishes everyone.

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