BRCA 1 and TNBC - Anyone out there?

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journey4life
journey4life Member Posts: 517
edited June 2016 in Genetic Testing

I want to establish a thread to provide a place for ladies wih BRCA1 and TNBC to share stories, hopes, fears and successes!

I'll start. I was diagnosed on 11/11/11. Because my mom had been diagnosed 2 years ago (no previous family history), my SO thought I should be BRCA tested. I was disheartened when the results came back positive. The cancer is in my right breast with 1 positive node that we know of. After consulting with my SO, MO, and PS, I chose BMX surgery with axillary node dissection on the right side and immediate reconstruction with TEs. I will also schedule an oopherectomy in the near future. My surgery is quickly approaching - January 31st. I am anxious and dreading it.

How many of us are out there? I hope you'll share your journey so that others can learn from you and provide support to you.  Lisa

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Comments

  • hydeskate
    hydeskate Member Posts: 297
    edited January 2012

    I am BRAC 1 positive and TNBC.

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Hi - I hope you don't mind that I read some of your posts to find out where you are in the BC journey. From what I read, it sounds like you had a tough time but you're now on the other side of this dreadful disease. Congratulations!

    My BMX and axillary node dissection surgery is scheduled for 1/31. It is now starting to sink in that my life will never be the same. How long did it take for you to accept that you had BC and that you needed to fight? Right now, all I can do is cry...about everything.

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Heidi - I just finished reading your posts on CaringBridge. You are an amazing young woman. In the midst of all you're going through, you still manage to find humor. Your story is a sad one but you are truly extraordinary. I'm pretty sure I'll look at my fight against BC in a whole new way after learning of your experiences. I hope you hear daily how special you are!  Lisa

  • kyroheal
    kyroheal Member Posts: 48
    edited January 2012

    Hi

    I'm 28 years old. Had stage 2a breast cancer and triple negative. Did chemotherapy and radiation and just found out I'm BRCA1 positive. I'll be doing a bmx in august and an ooph probably around 35 years old. Do you think that's waiting too long?

    Sandy

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Hi Sandy - I'm sorry you are here but glad you found this site for support and information. I wish I knew the answer to your question. I had an ultrasound yesterday to check my ovaries - thankfully, they look normal! I have a pre-op appt with my SO next week and I plan to ask him how long I should wait until I have an ooph. I'll gladly share his recommendation. When I found out I was BRCA1, I made the decision to have a BMX as soon as possible. I didn't like the increased risks associated with the d*$n gene so I chose not to wait. Another factor that contributed to my decision is that I have at least one positive node (it was found during the ultrasound of my breast and came back positive after biopsy.) What does your onc say?

    Did you have a lumpectomy?

  • hydeskate
    hydeskate Member Posts: 297
    edited January 2012

    Sandy, 35 is the same date the doctor's recommended me for me.  But the way I figure Ovarian didn't hit my mom or Aunt until 53, so i haven't decided when to have it.

    lisajcj, thanks I decide from day one I wasn't going to sulk, that and its just they way I am, acting crazy and laughter got me this far so what the h*ll.  

  • Miller1353
    Miller1353 Member Posts: 84
    edited January 2012

    I am BRCA1+ and er-.  The pathology said I was pr+, but my onco treats me as a triple negative. It's a kick in the pants to feel like you have a few strikes again you that other breast cancer patients do not. I have reconciled that my body has the mutation, but I'm very sad that I have to share this with my daughters as they get older. I was 43 at diagnosis, so I went with a hysterectomy. Like hydeskate, I believe this is what it is. I have to play the cards dealt to me.

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    demiller4 - Initially (several times) I said "it is what it is" and thought that's the way I felt about my diagnosis. Then I learned about the BRCA1 gene. That's been a tough one to deal with and I'm still trying to wrap my head around it. Thankfully, I don't have daughters but I do have 2 sisters that I worry about. One has said she'll get tested after my life settles down a bit...the other, I don't know what she'll do.

    I think that once the surgery is behind me, I'll be able to deal better. Hopefully, it'll make me mad and want to fight!

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Heidi - its good to see you here. Hope today has been a good day for you. How are you feeling these days?

  • Miller1353
    Miller1353 Member Posts: 84
    edited January 2012

    If it is any help or comfort, I felt better after my BMX. Friends would ask if I mourned the loss of my breasts, and I honestly did not. My breasts had the potential to kill me, so they had to go. I remember the night before surgery, I got out of the shower and thought I should.take a good last look at them. I shook my head and did not allow myself to go there. We all deal with things in different ways, so it may seem odd to some. To me, it was less about my physical appearance and more about looking ahead, trying to be around for my children. There are no gauarantees that this won't come back, but I like my odds a whole lot better now than before. You are in the midst of a whirlwind right now. I did not believe it when others told me it would get better, but it does. My life is forever changed, but I am grateful for every day. Best wishes for your surgeries.

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    demiller - your post is comforting and a "whirlwind" is a perfect way to describe the waiting, wondering, and anticipating. I think I am mourning the sacrifices that need to be made in order to try to beat this hateful and hurtful disease. I can't wait to be able to celebrate life rather than mourn the changes. Your words are truly encouraging. Thank you.

  • hydeskate
    hydeskate Member Posts: 297
    edited January 2012

    lisajcj, everyday is about the same, I am actually battling two things TNBC and Sjogrens Syndrome.  TNBC under control for now but the Sjogren's is on a tear.  I am just getting over walking pneumonia,  I get another chest x-ray on the 31st to see if the anitboitics cleared up the lungs.  Depending on what it shows I may have to get a CT Scan which I think may happen, my liver has been acting up and my left lung sounds funny.

    I take it one day at a time, work helps me to forget about the pain from all the surgeries and amount of Chemo I was given to get me NED for 2.5 yrs.  

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Heidi - I hope the antibiotics do what they're supposed to and you'll be pneumonia free. I'm a little surprised that they don't want you to come in sooner than the 31st just to check on how you are. However, I'm sure you're tired of going to doctor after doctor. Make sure you take good care of yourself.

  • bak94
    bak94 Member Posts: 1,846
    edited January 2012

    I am also triple neg and brca 1 pos. This is my second time around. I have no idea why I was not tested my first go around, as I have a strong family history. I probably would have made different choices had I known I was positive. I was 36 the first time and 44 the second time. I had bmx this time and will have a hysterectomy after I finish with rads (haven't started yet).

    Heidi-you are an inspiration on how you live your life! Yes, I need to learn how to celebrate more, been feeling pretty down lately!

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    bak94 - I agree that you should have been tested the first time but was it readily available then? If so, insurance companies probably did little to pay for it so your doctor didn't mention it. Who knows. How are you feeling after your surgery? Haven't you had a difficult time with your port?

    I, too, need to celebrate more and cry less. I'll work on it once I get this surgery out of the way!

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Heidi - I would love to hear how you've been doing and whether the antibiotics are working. Please post when you can.

  • hydeskate
    hydeskate Member Posts: 297
    edited January 2012

    Thanks for asking lisajcj:  Anitbotics have seemed to work, no more crackling noise in my lungs.  I get another Chest x-ray on the 31st, still dealing with all kinds of flare-ups from my autoimmune disorder.  One thing gets better only to be replaced by something else, some liver pain and other weriod stuff. 

    I go to the Rheumatologist on the 9th, he is the expert on the Sjogren's which my ONC is trying to manage at the moment.  I know what his solution is to supress my immune system which could mean hello cancer.

    Taking it one day at a time trying to get back in to a routine schedule & sleep schedule not having much success. Sleepy all day than BAM 5pm to 1am full of energy, yeah my work schedule is 730/8am to 5pm this semester...lol..Some days 6 hours sleep, than 10, than none, than 1..and waking up feeling like I just played 110 minutes of soccer.....weekend coming up meaning sleep all weekend than awake all week..

  • naturalhorse
    naturalhorse Member Posts: 33
    edited January 2012

    I am BRCA1+ and TNMBC

    Original dx at age 43. Stage IIB. Finished treatment (chemo, surgery, chemo, radiation) May 2010. Only family history was paternal grandmother w/BC.  She was treated and died at a ripe old age of multiple organ failure. My sister has tested negative for the BRCA mutation.

    I was diagnosed metastatic 12/2/11 

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Wow - what type of surgery did you have in '09? Have you had another surgery since your diagnosis? What is your treatment plan? I am so sorry you have to go through this after having been given what you thought was a clear report. How are you doing emotionally? 

  • naturalhorse
    naturalhorse Member Posts: 33
    edited January 2012

    I had a bilateral mastectomy w/sentinal node biopsy (negative) and tissue expanders. In July 10 I had an oopherectomy and implant exchange.  I really wish I had gotten the complete hysterectomy at that time but I was so tired of being 'down' that I chose the fastest recovery time.

    About the same time we though the cancer was back (11/11) I had an abnormal PAP smear, too. Since I am back in chemo for the bc the hysterectomy is inadvisable but I will be having a LEAP procedure to removed the diseased portion of my cervix.

     Emotionally ???  Honestly, I'm okay right now.  For the first few weeks I was a basket case.  Now I think I'm numb to bad news :-)  We've also had some stuff going on with my father's health.

    I am due for scans next week to see if the current treatment (Navelbine) is working.

    Thanks for asking,

    kc 

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    It has only been recommended to me that I have an oopherectomy, probably after all treatments are done. Should I ask my gyn about a hysterectomy? Does the dr think all your recent areas are from your original BC diagnosis? If so, how did he/she determine that?

    Try to keep your spirits up - I hope you find that the Navelbine is working. Keep me posted. I have surgery on Tuesday and will try to get back here later in the week to check on you :) 

  • mamachick
    mamachick Member Posts: 229
    edited January 2012

    I thought I might join too.  I am BRAC1 and TN also.  I was diagnosed at 40 in Sept. 2010.  Had a BMX with TE's, chemo TACx6 and then exchange surgery June of 2011.  Still more surgery ahead, but won't get into that now.  My sister also had BC at 40, but was never tested for BRAC.  She is 9 years out now, but our cases were much different.  My paternal grandmother died of ovarian cancer at 52 after being treated for about 4 years.  I honestly didn't know I was BRAC1 till July of 2011.  Had insurance issues.  Very thankful know that I had the BMX anyway and had already had the hysterectomy and ovaries removed due to other issues.

    I try to take one day at a time and not let the what if's take over my life, and to enjoy my family.

    Lisa- will be thinking about you next week for your surgery, let us know how you do and know that we are here for you!

  • naturalhorse
    naturalhorse Member Posts: 33
    edited January 2012

    lisa,

    I'll be sending healing thoughts your way on Tuesday.  Loosing our breasts is not easy but, in my opinion, it is better than the alternative.  The TEs are uncomfortable, but doable.  I have a sick and twisted sense of humor.  I called mine my 'frankenboobs'.  If I lose my sense of humorduring all of this I might as well quit :-)

    I am at high risk for cervical cancer for reasons unrelated to BRCA.  Only the ooperectomy was recommended but I wanted everything out.  I'm done with all of those parts and really am tired of finding other things wrong in my body :-)  The gyno said it would be very rare (like TN at 43 and BRCA + or mets?) for the cervical disease to be related to the bc.   It honestly doesn't matter to me.  I do wish it was as easy to remove the bc mets as it is to remove the diseased cervix :-)

    kc 

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Stacey - my maternal aunt also died of ovarian cancer at age 52. We're thinking that the gene probably came through that side of the family. My mom saw her onc this week and she recommended mom be tested. She says she'll do it after my surgery - doesn't want anything to interfere with nursing me back to health. I am so fortunate to have the support of my mom and sister!

    kc and Stacey - thanks for the well wishes. I'm not looking forward to it but have accepted that it needs to be done. I just don't want any surprises when I wake up.

  • bak94
    bak94 Member Posts: 1,846
    edited January 2012

    lisa-still trying to get used to my new body. I do have tightness and low range of motion. My port had to be taken out because it became infected, after I was done with chemo. I was hoping to keep it for awhile for blood draws and zometa ainfusions.. They did do the brca testing back then, I really just think my doctor felt testing was unnecessary and I figured I was positive, what I did not know was my higher chance of a new primary! I new I would have my ovaries out at some point, but man, time flies and I hadn't gotten aroung to that.

  • dsc42
    dsc42 Member Posts: 1
    edited January 2012

    I had my lumpectomy before I found out I was Brac1 and TNBC- going though my chemo now and then when done will have BMX andOoophrectomy to forllow. I definately cant wait to have this all done and not thinking twice about it

  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    dsc42 - welcome and yet, I'm sorry to see you here. Us BRCA1/TNs have a uniqueness all our own so for me, its nice to talk to someone who knows. I'm glad I didn't have two surgeries like you will have to endure. I am so sorry for you. My SO and MO thought the results of the test were more important than immediate surgery and chemo. Did they change your chemo regimen after the test results came in?

    Well, surgery's tomorrow and looks like I'll be first on the schedule. The upside is that I won't have too much time with a caffeine headache! My SO was kind to prescribe valium to take in the morning - I think I may need it.

    kc - I like "frankenboobs"! Maybe it'll be easier once they're gone to not refer to them as the "girls." Remember to let us know how the scans go this week.

  • Miller1353
    Miller1353 Member Posts: 84
    edited January 2012

    Lisa,

    I opted for a hysterectomy. When the medical onco said that I had an elevated risk of uterine cancer, I figured I might as well get rid of anything that might get cancer. I had it done laproscopically, and the recovery was minimal. I was back at work within two weeks. I could have gone back within a week, but decided to take some more time. I had two healthy teenagers, so I really didn't need my reproductive system. It was one less thing to worry about.  

  • naturalhorse
    naturalhorse Member Posts: 33
    edited January 2012

    Lisa,

    I'm thinking of you today.  

    kc 

  • mamachick
    mamachick Member Posts: 229
    edited February 2012

    Lisa- I hope you are doing well and recovering with minimal discomfort, though I know it is going to be a little tough for a while.  Remember TE's aren't forevever! Continue to send good wishes your way!

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