Positive for BRCA

Hi Marie, Sorry about your test results and all your family history. I have the BRCA2 mutation too, I'm 41. Following the meeting with the genetics counsellor where I learned the results, appointments were made with a doctor at an Ovarian Cancer Clinic (for testing and consultation on potential next steps like oopherectomy), and with a breast cancer doctor. I then had a mammogram and MRI, just for a baseline, but breast cancer was found from this exam and here I am.

When I got the BRCA result, it took some time to sink in, but at some point I realized that my life was going to be different from now on. Either I was going to need more tests for the rest of my life, or go through surgery, or whatever. But life is different and I still have a hard time accepting it. Me, sick? Nah! I get strength from knowing that I am actually lucky to have found this BC early on, because of the BRCA. Same with the potential ovarian cancer - once I have a oopherectomy/hysterectomy (later this year?), I won't have to go through ovarian cancer like one of my aunts did. I also get strength for knowing that I have to go through a tough 1-3 years, but after that, my life won't be consumed by cancer anymore -it will always be there (the monitoring, etc.), but it won't take over my life.

Your children give you this reason to live, so whatever you choose to do in the coming months, you know it will be to ensure you are there for them for the long term.

Here's my limited knowledge - for breast cancer, you basically have 3 options: prophylactic mastectomy, tamoxiphen, or regular mammograms. BC is relatively easy to detect, so I personally don't think you need to rush for surgery if you're not ready (of course, assuming you have no BC already ). For ovarian cancer, it is supposedly difficult to detect and when it is detected, it is often at an advanced stage. This is why oopherectomy was strongly suggested to me. However, I was told that women with the BRCA2 mutation have a higher chance than the general population of getting ovarian cancer mainly once we turn 40. So ovary removal might not be something doctors will urge you to do yet. However, please consult your doctors, this is just the little info I have.

I hope you have access to knowledgeable genetics counsellors and cancer specialists where you live. Try to obtain as much information as you can, and choose what is right for you. The FORCE website (http://www.facingourrisk.org/) is a good place to read up on all this.

Keep in touch and good luck!

Hello  just tested positive for BRCA 1.

Have had breast cancer twice and chemotherapy and radiation twice in the last 4 years.  Finished Herceptin in December 2013 .

Just about to start finding out about my surgery options. Really feels like this constant nightmare is never going to end.

Any treatment recommendations are appreciated.  Feels like my local hospital is my second home.

Hey Marie, 

I am/was in a similar situation. I'm 24 (25 in August) and my mom was diagnosed with breast cancer 3 years ago. She went through chemo and radiation and she's doing really well right now, but her family has a full history of breast, prostate, and ovarian cancer. She tested positive for BRCA2 and I did as well summer of 2012. At the time I was living in Japan (I got tested when visiting home) and knew that I wouldn't be getting anything done while living out of the country so I spent that entire year researching and reading blogs and came to the pretty solid decision that I wanted to DO something about it.

When I moved back to the US this past August, freshly unemployed and happily single, I immediately (ended up being a 2-month process) got myself back on my parents' insurance and started setting up all the necessary appointments to speak with people.

It seemed the general consensus was that tamoxifen wasn't really something anyone recommended for me because of my age at the side effects so: 1) surveillance or 2) Prophylactic surgery

I didn't feel that surveillance was right for me. My priority wasn't catching cancer early, it was not getting cancer at all. So we started talking about surgery.

It's important to note that I've always been pretty uninterested in having kids and those moments where I think I might someday want them usually involve me heavily considering adoption. In other words: Having biological kids has never really been a priority for me and getting to breastfeed is even lower on the list. And then, taking into account my currently unemployed/living with parents who've been through similar&WORSE/on my parents' insurance, it made sense to do it immediately when my life was already at this inbetween moment where all I needed to do was delay the job search for about a year.

TL;DR

My genetic counselor, ob/gyn, BS, and PS were convinced I had thought through everything thoroughly and agreed that a prophylactic double mastectomy with immediate reconstruction was the best choice for me. Everything moved really quickly for me. My MRI was on New Year's Eve and I got a phone call from my BS discussing the results on Jan. 7th & during that same call my PS had a cancellation so she scheduled me for my first surgery exactly a week later. My BS and PS decided that, because I was young, healthy, and had large and dense breasts (44DDD), a staged mastectomy/reconstruction would be preferable. 

The agreed-upon procedure (highly recommended by both surgeons) was to first get a simple breast reduction to get size and shape and then when that healed ~3 months later they'd do a full mastectomy with direct-to-implant reconstruction. They called it a 'staged mastectomy' for the sake of insurance.

This past Tuesday (Jan. 14th) I had the breast reduction completed and am feeling great. My surgeons are really thrilled and excited for me and the only sobering comments have so far been about the next step: my ovaries and tubes, but that's a decision for another time and I can only hope I'll feel as confident about it as I did about this.

Hi Marie 82. ...and everyone else,

I just turned 34 and I have BRCA 1. I was planning to have a double mastectomy in the next couple months, but I find myself stalling the process. My mom died from Breast Cancer when i was 19 and I have two little girls (3y & 8mo.). I am still breast feeding and am not wanting to stop even though my plan was to stop after 6 mo. Once I stop BF I have to wait 6 weeks before I can have surgery. im not sure I am done having kids but feel a pressure to have the surgery sooner than later. As a mother, what is your opinion? Thanks so much

I am 36 and got diagnosed BRCA 2+ about 8 years ago. My great grandfather and aunt died of breast cancer. My mom has been going through BC for 13 years now. Last April I decided to do a bilateral mastectomy with immediate reconstruction. Seeing my mom go through the pain of expanders made me realized I didn't want to go through the same thing. So I opted for DIEP reconstruction. This is where they use your own tissue to make a breast. It is considered microsurgery, since they have to attach the vein vessels from your abdomen to the ones on your chest. The surgery is long, usually 6-8 hours for a bilateral, but not really risky. I am very happy I chose to have this done. I don't need to worry about having BC in the future and my breast look so real! And..., I got a tummy tuck on top of it! I hear so many stories of women that get implants and how painful and uncomfortable they are. Mine feel so real, soft and warm. I couldn't imagine having implants in my chest, but not everyone is the same. I would advice any woman with this mutation to really think hard about the decision they have to make. I think for us is not IF we get cancer, but WHEN! Our risk percentage is so high, and I wasn't willing to take that chance, specially having kids. I feel horrible that I might have passed the mutation to my children, but not much I can do about it now. My doctor told me that I can have them tested after the age of 22, but of course by then it will be their decision.