Nicole

BRCA2

You’re never ready to hear the word cancer. Never. No matter how much you’ve tried to prepare yourself for it, you’re never ready. When I got my results, I remember everything just falling away, and that being my sole focus. Fear set it, and then panic. Cancer. How does a 27 year old girl cope with that? How was I supposed to deal with that? Cancer? No. That’s something you deal with in your 40’s, 50’s and so on. But 27?

I found a lump and my doctors were sure it was just a clogged duct. Ignore it. Give it a few months. Ice it. Apply heat to it. I heard it all. They did ultrasounds and mammograms. Nothing. Finally I found a doctor who decided to take a look at my family’s history. Every woman in my family, except my mother and my cousin, had been diagnosed with breast cancer. Granted, they were all much older, but he didn’t want to take the chance, and decided to do a lumpectomy. September 13. A Friday. Friday the 13th. Go figure. They didn’t take much because like everyone else, they didn’t expect to find cancer. It was just a precaution. The results came back and shocked us all. Cancer. Even my doctor sounded surprised. I remember having to tell my Mom and my boyfriend. That was hard. They were both shocked into silence. They didn’t know what to say or do. I went back in on September 23rd for the second surgery. They wanted to take more to make sure they got clean margins, and the scariest part, to take lymph nodes to see if it had spread. Waiting for those results was the scariest moment of my life.

Thank God, they came back clean and then it was decision time. They decided to do genetic testing given my situation and the family history. My mom, my aunt, myself, and my cousin all got tested and came back positive for the BRCA 2 gene. I had a very high risk of getting a second cancer, and a high risk of ovarian cancer. This was pretty bleak news, but it helped me make a decision that I’ll never regret. I met an amazing group of women that helped me make that choice by giving me information that my doctors didn’t. With their help and the support of my family, I decided to skip radiation and go straight for the double M. As much as I liked my boobs, I wasn’t willing to die for them. So on my 28th birthday, I decided to go ahead with the surgery. Nipple sparing double mastectomy. I went through several consultations. Met some doctors I didn’t like, and some that I absolutely loved. And I met a woman named Jessica who was like a breath of fresh air. She was the first person to say “It sucks. It’s going to suck, and it’s going to hurt, but it gets better. I promise”.  She was so honest and I loved it. I feel like she prepared me for the worst of it, but was walking talking proof that it gets  better. I still talk to her to this day. She was such a big turning point for me. I went from being unsure to feeling more confident about the procedure.

Dr. Perry Johnson and Dr. Janet Grange are the two I ended up going with and I’ll always be so grateful for them.  January 6th, the day of the surgery, I had a panic attack because I was so unsure of my choice. They talked me through it and calmed me down. They came in and reassured me that they’d take care of me and do their best for me. They were with me the whole way. My mom and my boyfriend Jake were by my side, my family was there for support, the amazing, brave women of bright pink checked in all day long to see how I was doing, and kept me sane the whole week before. I was as ready as I was ever going to be, and off I went.

I don’t know what I was expecting when I woke up, but it wasn’t what I saw when I looked down. I was black and purple and the nipple was gone on my left breast. The side the cancer was on. I broke down. This wasn’t what I signed up for. This was not what I wanted. Dr Grange came in and talked me to, explained that the cancer was too close to the left nipple to risk leaving it. It was her job to keep me alive. That was her priority. I understood, but my self esteem took a big hit. The first few weeks were the hardest of my life. I was physically and emotionally battered. I couldn’t shower, go to the bathroom on my own, couldn’t change clothes on my own. My mom was by my side the whole way. She stayed with me for 2 weeks, and then check up on me every single day after that. The women of bright pink were there to tell me it’d be okay. And eventually it was.

My family is the type to hide behind humor, so we laughed about it. Found the magnets of the expanders and stuck fridge magnets and bobby pins to them. Because when you have magnets inside you, you HAVE to stick stuff to them 🙂 Everyone wanted to feel how hard they were and poke at them, which I was happy to allow them to do.

The bruising went down, the wounds healed, and then my booby buddy went through the same procedure and we were able to swap stories and questions and “did you have this happen after your surgery?”. It was the greatest thing in the world, to have someone close to my age, going through the same thing, being able to hold each other up and reassure each other. Being able to laugh about it. Eventually I healed and then it was back into surgery for the swap. Expanders out, implants in. That was easy. But then, a lot of things seem easy once you’ve had a mastectomy. A bikini wax is like a walk in a park on a nice spring day compared to the double M. I still had no left nipple though and that was still an issue for me. I couldn’t handle it. So then the third surgery was planned. I was going to have Dr. J rebuild it. I didn’t need any medication after that surgery. At this point, I was a seasoned pro at this surgery business.

Today, I’m very happy with my results. I chose the right doctors.  I still have issues with some of it, mostly just the emotional hit I took. Girls my age weren’t worrying about nipples and cancer, or hot flashes from the menopause caused by Tamoxifen. They were getting new houses, new cars, having babies, getting married, and I was over here trying to decide whether I was going to have my nipple rebuilt or tattooed on, and what kind of implants I was going to have put in. It didn’t seem fair. I was angry. Really angry. Why me? But then a dear friend of mine said something that changed it all. She said “Why not you?”.  She was right. Would I wish my fate on anyone else? Absolutely not. Why not me? What’s so special about me that I can’t get cancer? Nothing. I’m just like millions of other women dealing with this, and as much as it’s taken from me, it’s given me so much more. I’m one of the lucky ones. I had a positive outcome. There are some that would kill for my life. I’m lucky. I’m covered in scars, and I do have days where I just can’t deal. I still get angry and I still get sad. I still get scared about a second cancer. I have a hysterectomy looming in the near future. I have to decide on kids, a decision I’m not ready to make. It’s not an easy life, but it’s a life, it’s MY life. It’s complicated and messy and some days are harder than others but I have the greatest friends in the world, a boyfriend that has proven he’ll be there through anything, the women of bright pink, who saved my life, and a mom who has been my best friend, my nurse, and my rock through this all. I couldn’t have done it without her.

If I were going to give anyone in my situation advice, it’d be to stand firm. Don’t let doctors or anyone else push you around. You know what’s best, it’s your body, and your choice. If you get told no, get a second, third, fourth, tenth opinion. Be your own advocate. Don’t settle for “maybe” answers. If you feel something, don’t let them tell you not to worry. Find someone who will give you results. Don’t ignore it. Don’t avoid it. You’re never too young, never too thin, too big, too healthy for cancer. Take care of yourself, because nobody is going to do it for you. If I had listened to my doctors, and ignored it, or waited, I might not be here now to complain about them. Listen to your gut, and trust your own instincts and judgment.