BRCA 1 Positive-Double Mastectomy and Reconstruction

sdekans1

Hi all!

So I just tested positive for the BRCA 1 mutation. I'm 24 years old and was pretty sure of my results beforehand. I meet with my genetic counselor and a breast surgeon in a few weeks. My plan is to have a double mastectomy and reconstruction. This is new territory for me though so I was hoping to get some advice about the procedure. What to expect? What you would recommend as far as reconstruction goes? How this will affect having children if at all? Things like that! I'm hoping this will spark some questions for me to ask the doctors when I go in as well! Thanks so much for the advice!

Stephanie

christina0001

Welcome Stephanie, although I am sorry you have a need to be here. This is (in my opinion) the absolute best place on the internet to get information about all things related to breast cancer.

For anyone looking at reconstruction, I recommend "The Breast Reconstruction Guidebook" by Kathy Steligo. It's not very long, and it's an easy read. The book can explain all your reconstruction options, which is so helpful.

Breast reconstruction should have no effect on your ability to have children, but it may effect your ability to breast feed.

I am going through the reconstructive process right now. I chose to do a free flap option called DIEP, where fat/tissue from my tummy was used to create a new breast for me. I think it's a great option for us young folks (I was diagnosed at age 32). By using our own tissue, we don't have to worry about implants needing to be replaced in the future. And my new breast is warm and soft. I have nothing against implants, but I was a little uncomfortable with putting a foreign object in my body, and I loathed the thought of the possibility of the implants needing to be replaced in the future. Free flap surgeries are pretty intense and not fun to recover from, but if you are young and in good health it is very doable.

Feel free to meet with a couple of different reconstructive surgeons; it is so important to be working with a surgeon you feel comfortable with, and is comfortable with the type of reconstruction you want. Not all surgeons are comfortable doing all types of reconstruction, and you want to choose a surgeon who does the kind you want, frequently.

Good luck to you, and good for you for being so proactive in taking care of your health.

BayouBabe

Stephanie - be sure to check out www.facingourrisk.org. It has a lot of information for those of us that are BRCA +. Sorry you need to join us here, but glad you are being proactive. My daughter may one day be following in your shoes. Hugs as you travel this road.

sdekans1

christina0001: Thanks! I will definitely read the book. Before I took the test I knew that this would be the next step I would want to take but I never knew anything about the flap method. I don't like the idea of having implants either. Thanks so much for sharing. Reading about the flap procedure online and actually hearing from someone who chose that method makes a huge difference! :-)

BayouBabe: Thank you for your positive words and advice! It is very much appreciated!

CareBear1226

I'm scheduled to have a Double Mastectomy, Breast Reconstruction and a Hysterectomy all in one. Have anyone done this and what would your advice be to me.

BayouBabe

Carebear122 - I had a BMX, placement of TE, and a bilateral oopherectomy all on the same day. My best advice would be sure to line someone up to help you almost round the clock for the first week. I have an electric recliner that allowed me to get up and down on my own. I could not, however, get in and out of bed by myself during that time. I also did not have the strength to drain my own drains, and needed someone to do this for me. I made charts ahead of time to record my meds, so I would not miss any doses and could stay ahead of the pain. This also allowed people to help me in shifts and see when my meds were taken last. Be sure as well to have a lanyard for your drains in the shower. A shower chair is a must as well - I used a camping cooler to sit on, but an outdoor chair will work also. Wishing you the best. Hugs!

CareBear1226

BayouBabe,

I am happy to know I'm not the only crazy one out there to have all three done in one day . I just do not want to recover from one surgury just to have to go thur it again. I will have around the clock support. My husband is taking two weeks off work and my sister is flying in the day before my surgery.

Thank you for your advice. My doctors are telling me that I may have to stay up to 5 days in the hospital but I'm going to look into purchasing a recliner and a chair for the shower.

Thanks for fighting like a girl!

BayouBabe

Carebear - I had my husband and my sister who flew in caring for me as well!Sounds like you are in good hands! The recliner is a good investment; I would have been lost without it.

Nancyleonor78

Hello my name is Nancy I'm 35 years old and I'm BRCA 1 positive. This information that you posted is very helpful. I will be buying this book. I'm scheduled to have surgery soon. My husband is very worry of me having my breast removed. I'm also gonna have my ovary removed. My mom in September 2013 was diagnosed with ovarian cancer stage 3. But thank god she's recovered very well and she's cancer free. I'm not gonna lie I feel very sad and scared. I think about my kids especially my daughters. Any helpful advice. 

Thank You