BRCA Journey: A Lot Can Happen In A Year

On this day last year, I had my first genetic counseling. At that time, I had no idea that a year later I’d be two months out of my preventative surgery.

Do you ever wonder how your life is going to look a year from now? Who is going to be next to you, how are you going to feel, what could you be going through, and how would your life be different from today? I stopped wondering that a long time ago.

I’m sure if I had made a list a year ago, none of what is happening right now would be on it. I also had no idea how important number six would be, even though I always thought of 6 as my lucky number.

I’m writing this post because today is a very special day. A year ago, I had my first genetic counseling to find out if I have a genetic predisposition for breast cancer. And two months ago, I underwent preventative surgery to remove my breasts and reduce the risk of this terrible disease. But let’s take it one step at a time.

Before BRCA

I’m almost 36 years old and the year 2019 was the most important in my life (apart from 1984 when I was born, obviously). It’s now known in my life as the “before and after BRCA” year. Yes, I’m aware the BRCA1 genetic mutation was in my DNA even before I was born, but I wasn’t aware of it. So, it doesn’t count.

On February 6, 2019, I visited a genetics counselor and hoped with my whole heart they would do a DNA test. Genetic testing isn’t something everyone gets, but I was one of the lucky ones. Good thing too, since I learned I have BRCA1 genetic mutation, which significantly increases my chances of breast and ovarian cancer.

After my sister got diagnosed with breast cancer, I knew that automatically means I have a higher risk than an average woman. But a genetic mutation (damaged gene) implies an even more significant rise in breast cancer risk (from 20-30% to 60-85%).

I remember going to the appointment without any fear or anxiety. I didn’t even think how much that day could change my life. That was still me before the BRCA period. I chatted with the doctor, asked questions, acknowledged that my having a mutation is a long shot, gave a blood sample, and moved on with my day.

It was an important day for sure, but nothing life-changing. Well, that little blood sample did change my life. Big time!

After BRCA: a surgery to save my life

I already wrote about the genetic testing process and the day I got my results, but I haven’t said much about what came after.

December 6, 2019. It was Friday, the big day. Exactly two months ago, I had my prophylactic surgery during which they removed both of my breasts and fallopian tubes. I was lucky enough that my surgery was scheduled early in the morning, so I didn’t have to suffer many, many hours waiting (while hungry).

They took me to the operating room at 7.30 am and I was already a little woozy from the pill they gave me. I vaguely remember minutes leading up to surgery and then nothing. It was around 1.30 pm when I woke up already in my room. I only know that from my phone records – I texted and messaged everyone I was still alive, but I have no idea what I wrote (and to whom).

I had no visitors. No one can come to see you on surgery day. Good thing too, since I wasn’t much of a company. I slept the entire day with minor interruptions – nurses and doctors checking in on me, machines beeping, etc. All in all, not a bad experience. I slept all day and all night. In the morning the pain was unbearable, but once they cut me out of my compression bandages, I was as good as new.

I had a visit from a dear friend, who brought half of the grocery store with her (thank you, babe!) to get me to eat something. I felt pretty good, considering, and we spent the entire afternoon chatting and laughing (I tried not to because it hurt – I had stitches on my stomach after all). Apart from being in a hospital, it was a lovely Saturday afternoon, spent with a friend I don’t get to see as much as I would like.

On Sunday I got to go home. There were no complications, I was feeling okay, and the doctor said I was fine to go if I have someone to help me. Before I left the hospital, I had my bandages changed and that was the first time I could see my bare chest (I didn’t choose reconstruction if you’re new here).

The wounds were covered with tape, but I could see what was going on. I didn’t mind it at all. I thought it looked good. Not that I had any idea how it should look, but to me, it looked good. I didn’t have a panic attack, I wasn’t shocked, I was fairly pleased with the result and even more with my decision.

After the surgery

Some days it seems like these two months flew by and sometimes I feel like it’s been years since I was at the hospital. A lot has happened and there’s too much for me to describe everything here (I will post it, I promise). Let me quickly recap:

  • Day 1: surgery and (beauty) sleep
  • Day 3: homecoming
  • Day 7: drain removal
  • Day 15: first checkup with a surgeon, physical therapy, stitches removal (from my stomach)
  • Day 33: last checkup with a surgeon and final physical therapy

It turns out I’m a very good patient. In the two weeks between my first physical therapy (which was horrible) and my last, I managed to get my arms to full mobility. I must continue doing the exercises to stretch the ligaments and get rid of the scar tissue on my chest, but I can do that by myself.

My surgeon was also pleased with the results and how my scars healed. Unless there’s something wrong, I don’t have to go back at all. From day 33 to today there have been many ups and downs, most of which were emotional, not so much physical.

Recovering from major surgery (plus a minor one) takes a lot from you. There’s a whole new normal to adjust to. You must accept your new look, feel, and limitations. And sometimes that’s the hardest part. Dealing with it.

I have no regrets. No regrets about the surgery and absolutely no regrets about going flat (not choosing reconstruction). I know all these decisions were right for me. But knowing that doesn’t magically stop you from feeling overwhelmed, exhausted, irritated, and a little sad sometimes.

But it gets better. And most of what came from this is good. I don’t have to worry about cancer (much) anymore. I have amazing people around me who have proven they will be there for me when I need them most.

The last year has shaped me, toughen me up, changed me in ways I’d never expect. Guess what? I wouldn’t change that for anything in the world. I am exactly where I’m supposed to be.

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