Hello, My name is Debbie and I am 43. I was diagnosed last may with stage 2 breast cancer. I have small children, so I took the radical approach and had a bilateral mastectomy with chemo and radiation. Now I'm taking Tomoxifin. I'm getting used to my new life....and now find out I am BCRA1 positive. I'm going to have my ovaries and uterus removed and then they are micro-disected. If any cancer cells are found, then I'm looking at more treatment like chemo. I'm wondering if anyone has experienced this and if so, what was your outcome? I'm really, really good about being in denial and was feeling well enough lately to carry on as if nothing ever happened. But with this gene scare, now I'm already mourning that I won't be around long enough for my children. My mind goes to scary places immediately...even when it shouldn't. So, now as a newbie (wish I had discovered this site earlier), I'm reaching out for any similar stories and HOPE...God bless and thank you. xoxo

Hi Debbie. I did the same thing as you, only with a different time frame. I was diagnosed in 1984 when I was 37 and had a two-year-old. I opted for a bilateral too. I needed chemo because I had 22 positive nodes, and I also had radiation. At the time, they didn't know about BRCA, so I wasn't tested until about 18 years after my diagnosis. I tested positive for BRCA2. I was 55 at the time, and I had a total hysterectomy. All the pathology came back clear. It's true that the BRCA mutations can increase our chances of ovarian cancer, but I've never heard about any increase in the risk for uterine cancer. I do understand, though, why you want to have everything removed. I can also tell you that if you have the surgery aided by a laparoscope or robotically, then the recovery is not bad at all. I had four tiny incisions covered with bandaids, a little spotting for a week or so, and just some mild cramping. At any rate, here I am, 25 years after my cancer, with the BRCA2 mutation, and I'm doing great. No new cancers in all these years. Even though our odds of getting other cancers do go up, they do not go up nearly as much as our odds for breast cancer. I plan on living a long, healthy life even with the screwy gene! Also, my daughter, who is now 27, was tested and she does NOT have the mutation, so your children may also find out some day that they, too, are not affected. That's my hope for them. All my best wishes for you Debbie. 

Rena age 63 California Central Coast
26-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

I found out I had the BRCA2 mutation two years after completing treatment for Breast Cancer and many years after a hysterectomy that left my ovaries in tact. Now, when I wanted to have my ovaries removed, Medicare will not agree to pay for it. My advice is to get all the treatment you need/want while you can.
 
My daughter has not had BC, but she tested positive for BRCA2 also. At the age of 46 she had her ovaries and uterus and tubes removed. She kept her breasts but gets both mammograms and MRI's yearly. I am eligible for yearly MRI's also.

Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

Debbie, Welcome but sorry for your reason to join us. I tested negative for the BRCA gene but do have a long family history of breast cancer. I am thinking that at some point there will be more genes found that increases our risks for cancers. You are doing what it takes to protect yourself and I am sure will continue with your dr appointments. Do take care and join us anytime for support or more questions. You are now one of our sisters! Hope and Strength, Julie PS Forgive the run on..can't figure out how to fix the problem!

Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

Hi Debbie. I am also BRAC 1 positive but also triple negative so I can't receive any additional hormone treatment. Don't feet at all that your prognosis is bleak. I had a complete hysterectomy in December very soon after I was done with chemo. I did great with that by the way, I was back to work in a week and a half. I had radiation right after that and now am done and talking about reconstruction. My only concern is for my children, I have 3 daughters and one son. My girls will be tested once they are older and have enough life insurance to cover them for the rest of their live since they may not be able to get any depending on what the test results show. I will live a very long life! Stay positive and strong!

Jeni Samples,45
Diagnosis: IDC, Stage 2, Grade 2, Triple Negative 7/15/11
Bilateral Mastectomy
Extensive family history, BRAC1+
4 A/C,4 Taxol done 12/7/11 
Hysterectomy 12/30/11, radiation finished 2/12

Jeni, I was triple negative also and am BRCA2-positive. I'm a 25-year survivor now. I just wanted to say that your son should also be tested when the time comes. My brother is positive, and he has passed the mutation to his daughter. His two sons have not been tested. As a carrier, my brother has a higher risk for prostate cancer and breast cancer. I was grateful that my daughter tested negative, and I hope that will be the case for your children too. 

Rena age 63 California Central Coast
26-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Excellent point...when I met with the woman in genetics she did mention the info as it related to my two brothers and their children. Thank you, everyone, for your support so far. I'm sure I'll be on here with questions and concerns from now on. Everyone take care. :)