Staying flat after mastectomy

My name is Rochelle, and I was diagnosed with stage 3 early breast cancer and DCIS and I had a double mastectomy with aesthetic flat closure.

The moment that I realised that something wasn't right and that I possibly had breast cancer was in between having my regular breast screen and being called back to see them again. I woke in the middle of the night and just, you know, stretched and scratched and went oh hold on. I could feel something and I just knew. I just went. I think this is it. I think this is breast cancer.

The surgery that I was offered originally was a lumpectomy. On the visit to the hospital and seeing the surgeon she's, you know, gets you to sit there with your hands on your head and went, no, these breasts are too perky. First time in my life I'd ever been told perky breasts were not a great thing because they had to remove so much of the breast, there was not going to be enough skin to close.

So, she said that I would have to have a single mastectomy. And immediately I went, no, I want to double. It was not something that I really even had to think twice about. It was my breasts don't define me. Breasts don't define any woman. I actually don't identify as a woman, identify as non-binary. I was very, very adamant that it was a double mastectomy, or it was nothing.

I did a lot of research to come to the decision. I jumped online to have a look at, you know, what do we, what's the options when it comes to double mastectomies? And I found the term aesthetic flat closure. So, I've done my research and was really quite secure and this is what I wanted to have done.

The surgeon was not so on board with that idea and there were many discussions in the following weeks about what this might look like. And I was very, I very much felt that I wasn't being heard.

My diagnosis was in August of 2022 and my surgery was in October of the same year. So, it was around about 8 weeks between diagnosis and surgery. And during that time, I did a lot of research. I looked at all of the different websites that were available. I joined all of the groups on Facebook, which there are heaps that were about flat closure. So, I it really made me more empowered and able to have the conversations with the health professionals that I needed to have.

After surgery t did take a little while to get back to how it was before. 2 days in hospital, a couple of days at home with my partner. My partner did take two weeks off. After about a week I sent them back to work because I could lift the kettle and make a cup of tea for myself. I was told I could drive at two weeks. I didn't drive till three and then I was quite tentative. Just having my arm, the hands up on the steering wheel was a bit uncomfortable. I would say it was probably around about six weeks before I really started to feel like myself before I was back walking the same distance as I had been. I did walk after about two weeks down to the local shops and I was very, very slow with my little grandma trolley. But you know, a couple of weeks later I was back to walking as long but maybe not as fast. But I would say around about the six week mark I felt like I was pretty much on track.

After the surgery. My range of movement was really good, but I did suffer what's called cording and that was probably a couple of weeks after surgery. I went to reach for something and there was this really sharp pain and I, because I'd done my research, I did know that that's what it was. I felt it in my arm - once again, went online, put it out to the masses. You know, I need a physio who understands breast cancer. Can anyone suggest one? And they're thankfully there was one the next suburb over.

So, she was a physio who specialised in breast cancer and lymphedema and I was able to go to her over a period of about six months and she did scar tissue massage. She dealt with the cording and she kept an eye on me and, and the fluid levels in my body just to make sure that it wasn't at risk of lymphedema, which was absolutely fantastic. 
So, when it comes to my decision, I have absolutely no regrets about opting for a double mastectomy and an aesthetic flat closure. There's been lots of positives that I have found have come from it. The pain I had in my shoulder for 45 years has gone. It was almost immediately after the surgery. There's a bit of a Winnie the Pooh belly going on, but I did notice that straight after surgery, so it was probably already there. It's just a little bit more obvious.

It's also been challenging and fun at the same time, you know, working out what clothes suit my new shape. But I'm also really passionate about supporting other people to have the options available that they can make an informed choice and not be pushed in a certain direction. Whether that's because that's what the surgeon thinks, whether that's because, you know, our society says that you're only a woman if you have boobs. Whatever the messages are that they've been given, that they're making the right choice for themselves and they've got all the information to support them to do that.

I guess what I'd like people to take away is that it's really important to have all the information before you make a decision. And that if you don't feel like you're being heard by the medical professionals, and if you don't feel like you're being validated, and if you don't feel like you're getting the information you need, then see who you can get to help you.

I think the most important thing, it is your body. It is your choice. And sometimes you might have to fight for what you want, and that's OK. But get the people around you to help you on that fight. You don't need to do it alone.