Hey, so I know this is a forum for people who have already had a positive BRCA test however I am currently waiting for my test to come back. All of the female family members on my mums side have the BRCA1 gene mutation. I have already been thinking about what I may want to do if my test does show I have it and am currently thinking I would get a double mastectomy with reconstruction. However I am only 19, I would rather have no breasts than live in fear everyday however I just wondered peoples experiences with the double mastectomy with reconstruction. And one thing I've not seen spoken about much is whether you keep the nipples with that procedure or if your nipples are reconstructed. If anyone has any advice I would appreciate it.
Hi Holly19 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
Hopefully your test will come back negative, but I can understand your reasoning in wanting to know what to expect.
I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again. I'm sure some forum members will be along soon to share their experiences with you.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Holly19,
It's a stressful time waiting for your results, my thoughts are with you.
As far as I'm aware most mastectomies and reconstructive surgery involving nipple sparing means they remove the nipples and replace them regardless. I would imagine it's because the aim of the operation is to remove as much breast tissue as possible. It also means the incision is around the nipple only, and scarring is kept to a minimum. In most augmentation surgeries the incision is below the breast at the crease of the boob, so it's then hidden post surgery.
I struggled initially making my peace with the idea that post surgery, no implant or tissue exchanging surgery (from a my stomach for instance) would ever mean my boobs would look and or feel the same as the original ones. In the end after a second opinion I was advised against attempting reconstruction using my own tissue, because at that time I was very slim, and there just wasn't enough of me to make two boobs. So that was that.
Decisions about nipple sparing may also depend on the size of the breast? but I'm no expert. This is just based on things I've read across the internet.
Personally I opted to remove my nipples completely and not keep them. I felt if I was aiming to reduce my cancer risks, then keeping them, all be it with a small negligible amount of breast tissue behind them, it was potentially increasing the chances that cancer could still take hold in the tissue left behind. Also I'd read that the chances of necrosis are higher with nipple sparing, and felt again if they were taking them off anyway, what's the point in keeping them? This is my thoughts process for my body only, it's a very personal decision for everyone.
With preventative surgery both with and without nipple sparing they dramatically reduce your cancer risks to well below the national average, compared to someone who doesn't have the gene for instance. So have a good chat when you meet your consultant about the pros and cons so you can make an informed decision for you.
If you decide to not keep your nipples, post surgery once you've fully healed the NHS can refer you to a tattoo artist, most of which are amazingly talented these days and they can make you new very realistic looking at a glance tattooed areolae. I decided to go for a kick ass chest tattoo personally and sourced my own tattoo artist as wanted to ensure my artist only used plant based inks as I'm a vegetarian.
Wishing you all the best on your BRCA journey. Please feel free to ask any further questions and I'll be happy to answer to try and help you.
Love & Light
Anne-Marie
