BRCA test positive --now what

We have many parallels in our experiences, Jsrose. I, too, have grandmothers who are in their 90s, healthy and vibrant. My surgical oncology said that they complete a Gail model which predicts the likelihood of being BRCA+. My model showed zero percent chance of a positive result. NO family history of ANY cancer going back three generations. Well, I was positive for BRCA1. The results were faxed while I was in the surgical hold area awaiting a lumpectomy. It was a horrible, horrible day.



The BRCA test was a game changer, of course. My initial treatment plan was lumpectomy and 5 days of radiation. It changed to chemo, mastectomy and hysterectomy.



The early days of this journey were brutal. If I could tell you anything, it would be that it gets better. When you are forming a treatment plan, there are so variables. The fear is real, and it took awhile for me to reconcile that I was dealt a different set of cards than most.



Fast forward to three years after diagnosis, and I am doing well. I have worked the entire time. I did 8 round of chemo, BMX, hysterectomy and reconstruction. It was not easy. I have had 15 surgeries and over 40 nights of hospitalization. I have dealt with infection, necrosis, etc. I now can get up in the morning, and my first thought is not breast cancer. I can go through the day without obsessing over statistics, and fretting over someone else's experience. This is my journey. I am not a statistic, and my outcome may be very different than others.



Another little piece of advice from experience, is to monitor your ability to Google everything. Statistics are old, and again, your experience is unlike any other. I really terrified myself by trolling the internet.



I hate that I am BRCA+, but it is what it is. I have two daughters, so the implications are there for them as well. My 18 year old recently requested testing. She was negative. We will test our 16 year old daugher after she turns 18, if she is interested.



Hang in there. There are so many women who are doing well and thriving. I do not know what my future holds, but I am glad I am here today. Best wishes on your journey.



Dawn

I was diagnosed with BRCA2 after my lumpectomy.  Initially, I was concerned that I didn't have a mastectomy given my genetic results.  But my doctor explained to me that have the gene only told them the likelihood that I would get cancer.  Meaning I already got it so I didn't have to have a mastectomy since the gene had no bearing on my cancer coming back.  So I would have chosen a lumpectomy anyway.  What can I say?  I like my boobs...even though they are trying to kill me.  It's clearly an abusive relationship.  LOL!  I think if I found out I had the gene before I was diagnosed with breast cancer, I would have opted for a mastectomy.  But it made no sense afterwards since I already had it...unless you just want the piece of mind of it not returning.  But a lumpectomy with radiation has the same survial rate as those who have mastectomies.  So I have no regrets.  I didn't want the pain, recovery time, reconstruction, no feeling in my boobs, etc. when the survival rates are the same.  But it's a very personal choice.

As to the ovaries, BRCA2 has less of chance of getting ovarian cancer than BRCA1, but they are more likely to get melanoma.  I'm 38 so my doctor told me that I would need my ovaries out prior to menopause.  Women with my gene (or mutation) tend to get ovarian cancer after age 50 (more like 60).  So he told me I have time.  Frankly, I want more time with my ovaries.  I want the protection they can provide me before they try to kill me  (I know, abusive, right?).

Also, I had no family history of breast cancer.  Both of my parents tested negative.  They told me I had less than 1% chance of testing positive for the BRCA2 gene.  See how lucky I am? 

Hi ttkslee,

I am sorry to hear of your BRCA+ results. I am going to share how I feel in hopes it helps in some way. I was adopted so I was sure I was going to be +, I was negative. If I were positive I had planned on a DIEP immediately. I have read or used the cancer math and it led me to that decision, and I have or HAD ILC which is sneaky and 35% of the time bilateral. So here I am done with lumpectomy and rads, about to begin tamoxifen. Sigh.. at peace with my decision? Hell no I am not at peace in my mind. On the outside I am seem to be but inside there is a battle of fear and anxiety happening. My odds of it coming back in my rads side are 5%, MO told me very high risk in my healthy side. My challenge now is to find peace and in 6 months when I get checked if there is any question about anything or the word biopsy I do the DIEP. I am at peace with that choice. Many women play the wait and see every 6 months for years and never get it again. Its a chance we take and I think that if we can handle that keeping them is a good choice. I also see posts of women who began hating their breasts for all kinds of reasons, I dont feel that way but if I did I would have done the MX. The cliche its a personal choice is the truth and it is not a easy one to make. Go and look at the pictures of reconstruction via expanders/implants and DIEP or Tram etc.. it may help you to make a choice. I hope you can come to a choice, at peace? I am not sure but one you can accept yes!

Take care.. xo