BRCA 1 and TNBC - Anyone out there?

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

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.  

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.

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.  

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!

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 

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 

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!

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

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.  

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!