I Had A Double Mastectomy To Lower My Genetic Risk Of Cancer A Month Ago. Here’s How I’m Doing Now
In Bustle's Braving BRCA column, writer Sara Altschule shares what it was actually like to undergo a preventative double mastectomy with reconstruction, and what it was like to recover.
From the moment I found out I was BRCA 2 positive, meaning my BRCA gene had a mutation that increased my risk of cancer, I knew right away I was going to opt to have a preventative double mastectomy to reduce my chance of breast cancer by 90 percent. There was no question and no doubt in my mind. What there was though, was a lot of anxiety. I worked so hard to prepare myself as best I could for this surgery, but nothing can completely prepare you for the unknown. Now, I am one month post-op and I can say without a doubt that I made the right decision. No regrets, only a bit of pain (OK — at first, it was a lot of pain).
Deciding on whether or not to have this procedure has to be your decision. It isn't for everyone, and that's okay. But I knew that this operation would allow me to move on with my life and not have to worry about breast cancer every day. The thought of developing cancer was like a dark cloud hanging over my head, and I wanted the sun to finally come out.
The day of surgery my anxiety was through the roof, of course. But I just kept telling myself in my head, "You are one strong woman and you can conquer this." My friend told me that the last conscious thought you have before going into surgery will be the thought that you wake up with. This advice helped immensely because I did wake up feeling like one strong woman.
Honestly, I don't remember much from the moment I woke up from surgery until they wheeled me onto a gurney to go to the aftercare facility — probably all of those drugs they gave me. But the one thing I remember immediately after waking up is the sweet relief that I had made it to the other side. And of course, a huge weight off my chest (pun intended). I did it. I finally did it. All of the hours I spent thinking about this day and now it's finally over. I've never been prouder of myself.
But after the anesthesia and adrenaline wore off, reality hit me hard — now I had to recover. The thing I was most concerned about during my pre-surgery worries was the pain. Before my surgery, I was so consumed with how much pain I would feel and how I would handle it. But surprisingly, the pain wasn't all that bad. Sure, it's not a walk in the park, but it wasn't as excruciating as I expected. I was able to receive a nerve block that helps with the pain for the first three days, and boy oh boy, was I happy about that. When I was one week out, it felt like I was wearing an iron bra ten times too small. Now, one month out, it feels like I'm wearing a horribly tight sports bra. At least it's an upgrade from the iron one, right?
The most uncomfortable, annoying, and kind of gross part was the drains (which are tubes that are attached to your skin to drain bodily fluids). I know, doesn't sound too lovely, right? They were the most painful part, making it difficult to move because you don't want to tug on them and they made it tough to sleep. When they took them out (which didn't hurt at all) after a week, all I felt was sweet relief.
Because I was so focused on the surgery itself, I didn't think about the fact that after surgery I wouldn't be able to really walk on my own, move my arms, or even go to the bathroom by myself (thanks for the help, Mom). Having a support system is key when it comes to your first week of recovery. I needed my Mom to basically help me with everything from getting out of bed, to giving me my medication, to offering words of encouragement.
There are still moments when I think, "I am going to be feeling like this forever?" Being unable to do things on my own and not being independent takes an emotional toll, and something that I thought would be easier. Sometimes I feel great and other times I struggle, but I guess that's what recovery is all about. My doctors told me to think of getting better as an up and down process, not a linear one. Knowing that has helped me in the times I feel like I am weak. It's OK to have moments where you just cry out of frustration — I sure have. But just remember to cherish the moments (even if it's brief) where you feel stronger and happy.
Another thing I was also concerned with was if I was going to love my breasts after my surgery. Unfortunately, I've read other accounts of women who were not happy with their breast reconstruction and never felt as if their foobs (fake boobs) were their own. A mastectomy is far different from a breast augmentation, because the surgeon removes all of your breast tissue, which sometimes makes it more difficult for your new breasts to look natural. Would I have to go through all of this and hate my body? But, I can very happily report that I love my foobs. I feel whole and beautiful, and most importantly, I still feel like me.
Of course, the most important part of all of this is that I now don't wake up with the anxiety of wondering, "When will I get breast cancer?" One small perk of having the double mastectomy is that I will never need a mammogram ever again. Since my personal risk of developing breast cancer is now less than one percent, I will only need to have an annual breast exam and ultrasound. My ovaries are another story, however, since thanks to my BRCA gene mutation, my risk of developing ovarian cancer is between 16 and 27 percent — but I'll save that conversation for another day. The 'good' news is that my risk doesn't start increasing until I'm in my forties.
I feel like a completely different person from the time I was diagnosed with the BRCA mutation to now, one week post-op.
The biggest thing I've needed to remind myself is that slow and steady wins the race. Sometimes I get so frustrated with myself that I can only walk to the kitchen, and maybe, I won't be able to get up the stairs by myself until week two. But hello — I just had major surgery. Having friends and family remind me of how strong I am and how they are there to support me gets me through the rough moments. One step at a time — literally.
Looking back six months later, I feel like a completely different person from the time I was diagnosed with the BRCA mutation to now, one month post-op. From the constantly-stressed Googler to the gal who's now on the other side, I've come a long way. I am stronger, I have more gratitude, and I have an entirely different outlook on life. I can see the bigger picture more easily and I am immensely grateful that I am on the road to recovery and things are looking up, as are my new breasts.
To anyone else out there prepping for their double mastectomy or thinking about having this surgery, know that if a girl who was once terrified of getting her blood drawn can conquer this surgery, you can, too.