Read the story of Amy Lynn, breast cancer previvor

“A mastectomy is not a boob job. It’s not something I chose to do for vanity, it’s something I had to do medically. It’s a big emotional journey of coming to terms with your new body.”

My name is Amy Lynn and I am 30 years old. I went to school at the University of Florida and am now a pharmacist. I enjoy traveling and going to Disney and getting to spend time with family and friends.

Knowledge is power

In 2017, my mom was diagnosed with breast cancer. She had genetic testing done to see if she was positive for the BRCA mutation, but it was negative. However, we had a strong family history on my dad’s side so both my younger sisters and I got tested anyway, and we were all positive for the BRCA mutation. People think that breast cancer happens only to women, but men can get breast cancer too and men can carry the BRCA gene and pass it on. When I tested positive for BRCA I got my results first, and I was hoping that I would be the only one to have it because I didn’t want my sisters to have it as well. But then they both tested positive. In a way it’s also something that we share, we can be there to support each other and go through everything together.

After I found out I was BRCA2 positive, I kind of sat on the information for about two years. It’s either regular screening or surgery, and I thought I would never have surgery because I didn’t want to lose my boobs. Every six months I got an MRI and an ultrasound of my ovaries, because BRCA also increases your risk of ovarian cancer. It got to the point where I was tired of having to go through all of the test and screenings. And they’re so expensive, too! Then I had my first mammogram, and I realized I didn’t want to keep doing this over and over again. I had a friend, who was even younger than me, who I knew had also tested positive for the BRCA1 mutation. She was diagnosed with breast cancer. That’s when I was like “Okay, no more fooling around”. So I decided to have preventative surgery in January this year. Some people choose to never have surgery and to do monitoring every six months for forever, it’s a very personal choice. But after two years of thinking about it, I was ready.

People felt sorry for me when I found out I had the BRCA2 mutation, but to me knowledge is power. I’d rather know that I have this risk, that way I can do something about it instead of waking up one day and having cancer at a young age. It’s better to know than to not know.

Reconstruction

I’ve been bigger chested my whole life, it’s always been a part of who I was, so for me it’s always been clear that I wanted reconstruction. I know a lot of people choose to go flat, but for me that would have been too weird. I did a nipple and skin sparing mastectomy, after which I was totally flat for 10 days. Then I went back into surgery for the plastic surgeon to place the implants over the muscle. I could have chosen to place them under the muscle, but then I would have had to get expanders placed first and get them filled every few weeks to stretch the muscle. I heard it’s very painful. I didn’t want to go through getting fills and expanders and then having another surgery six months down the line to have them swapped out. The downside of implants is that they are not permanent medical devices, so after about 10 years I have to have another surgery to get them taken out and replaced to minimize the risk of potential leaking or rupture. But out of all scenario’s, that isn’t the worst thing.

The worst part of everything was the drains; tubes that are sticking out of you which are surgically sewn in to collect excess fluid after the surgery. I had them for a couple weeks, some people have them even longer. They are very uncomfortable, but I bought this cute little belt on Amazon for like 20 bucks which turned out to be a lifesaver. It was a super soft elastic, and it had two little pockets in front where I just slipped the drains in. I wore it 24/7, I even slept with it.

How to help

Surprisingly, a lot of people had negative things to say to me. I know that they don’t mean harm by it, but it shows that not everyone could understand what I was going through. Someone who I hadn’t seen or spoken to in years sent me an article on Facebook about a woman who tested positive for a mutation, had surgery and then years after found out that she wasn’t positive. Of course that freaked me out. It’s easier said than done to not let outside people influence you, but it is important as it is a very personal decision. Of course you’re going to turn to people for advice, but ultimately it has to come from what’s best for you. That was a big thing for me, which I think is why it took me two years to actually make the decision to have surgery. I didn’t want to rush into anything and regret it later. What helped me the most during surgery and recovery was my friends just being there and supporting me, regardless of whatever decision I chose to make.

Prior to having my surgery I didn’t know anyone who had had a mastectomy besides my mom- and my mom’s case was different because she actually had active cancer and, obviously, she’s older than me. Instagram is how I found a lot of people in the community that were going through the same thing. I just started searching hashtags and I found a couple of different pages and organizations, and I found a support group called the breasties. It was nice to meet a bunch of people that were all about my age and going through the same thing. It’s incredible what social media can do! Many people think that they might be alone, like I did, which is why I decided to be very open and post about my decision to have surgery. It’s just a matter of being able to connect with others and sharing stories or getting moral support. And I finally found someone who posted a list of the best things to buy- if I had known in advance, I would have been more prepared. You don’t realize that you will need a wedge pillow for the bed because you can’t use your arms to push yourself up. I had like 15 million pillows in my bed while I was recovering, there was no room for my boyfriend. And you need a lot of core strength to be able to pull yourself up out of chairs, one of the things I wish I would have done is like a million sit-ups every day!

Flaunt it while you have it

Breast cancer is not all pink and ribbons and happy times. It’s a lot of pain, and a lot of people unfortunately die from it. It’s a big emotional journey of coming to terms with your new body. Sometimes people ask me “Can I feel them? Do they feel real?” that’s such a weird thing. A mastectomy is not a boob job. It’s not something I chose to do for vanity, it’s something I had to do medically. It’s great that people wear pink to show their support, but there’s so much more to it. It’s so important to show the real side of it. After I had my mastectomy I looked down and I was like “Oh my god, what the hell did I just do to myself?”. I’ve had to come to terms with reconstructed breasts being very different from natural breasts. It’s impossible for them to look exactly the same. And then I have my scars, they go underneath both breasts and I have scars from my drains. Feeling beautiful again was something that I had to learn on my own. Seeing other people now posting and sharing their stories online, accepting their bodies as they are and growing to love their scars, that’s a reminder of something that I did for myself.

Before my surgery, I wanted to get nice photos with my old breasts. I looked into companies to do it but the photographers charge so much money, it was like hundreds of dollars and they are booked out so far. So I ended up meeting up with a bunch of my friends when I was home for Christmas, at one of my friend’s house. I had gone shopping with my mom to buy a bunch of lingerie, and we did a photo shoot just using my iPhone and a ring light in her bedroom and the hallway which had a blank wall. The photos came out looking very professional and it was awesome to share that with my friends. I printed the pictures and made it into a book. It was a nice way to flaunt my body, and to always have those pictures, kind of like a farewell. I had always wanted to do it but now was the perfect time. And I haven’t done it yet, but It will be fun to do the same kind of thing post-surgery!