BRCA Gene: An Interview with Previvor Amanda Hagley

We recently brought in our friend and breast cancer advocate, Amanda Hagley, writer of Why I Had a Mastectomy at 21 for a brief interview.  

After both her mother and aunt were diagnosed with breast cancer, she started looking into the genetics of breast cancer to see what she could do to avoid an eventual cancer diagnosis, herself. 

Amanda was incredibly generous with her time, and dropped a ton of value in this interview. If you or someone you care about want to understand the role of genetics when it comes to preventing breast cancer, subscribe to our emails!

(Transcript below)

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So, what is the BRCA Mutation?

The BRCA gene is a genetic mutation that runs in families that have a higher risk of breast cancer and ovarian cancer. It comes in two different forms. You have BRCA1 and BRCA2 there’s not a huge difference between them as far as risk goes but essentially people who have a BRCA gene are at a much higher risk of contracting breast and ovarian cancer.

So what made you decide to get tested and what age were you?

When I was 10, my mom passed away from breast cancer. She was actually diagnosed at a pretty young age, she was 36. When she was diagnosed, she was already at Stage 3 verging on Stage 4 so pretty late in the game. People who have BRCA tend to be diagnosed at much younger ages. 

When I got older I went to see a gynecologist to get on birth control to level out my periods, and you know all the fun teenager girl things and luckily I had a family doctor that was very adamant about looking into my family history, seeing a genetic counselor and kind of exploring the risk associated with breast cancer in my family. So at 18, I had genetic testing done. 

So, when you say genetic testers, what is that?

Basically you get a blood test, and they look through your genetic make-up and try to find this abnormality or mutation. In my case, my aunt had actually had genetic testing done. She tested positive for BRCA2, so she was able to sign off on her test results, and send them to my doctor who was actually able to use those to pinpoint the mutation within my genetic make-up.

So, when you got the call, “Yes, you have the BRCA2.” Do you remember what that was like?

So when I found out I had it, I gave myself a day or two to feel sorry and be sad about it. But for me, I think the biggest thing that comes with the fear of cancer is the fear of the unknown, especially when you are a previvor, (someone who doesn’t have cancer but is at a high risk). So I decided to arm myself with knowledge which I think is the best decision I could make for myself. Figure out what all my options were, and feel really comfortable with the decisions that I had to make moving forward.

When I was 18 and I got the results, that’s when I decided that I would get the surgery at the end of my college career. So when I was 21, I went and had the surgery a week after graduation. 

And you had a double mastectomy? 

Yes. For me to go through this major surgery was pretty scary. There was, again, a lot of research that I did leading up to it so I could know what to expect. It was kind of hard to find a lot of resources because a lot of people had bits and pieces, or I could find some information from the medical side of it, but I couldn’t find a lot of information from people who had actually had it done. 

I found a few good sources that I thought were really helpful. One of them was Bright Pink, which is an organization that focuses really heavily on previvors, hereditary risk and kind of, getting people ready for that. I actually had what they call a “Pink Pal” mentor which is a sort of mentor who had gone through the process. I emailed back and forth with her leading up my surgery, just to answer any questions that I had. 

There was also a really great documentary called “Screw Your Cancer” that a comedian Caitlyn Brodnick put on where she documented the whole experience, going through the testing and the surgery. Being able to see a real person going through it, versus a doctor telling me what th expect was a lot more comforting.

The surgery itself was about four hours long, and I was put completely under. I woke up and don’t remember much. I was on a lot of drugs for the 24 hours after that. I spent the night in the hospital and when I woke up the next day, I remember that the pain wasn’t quite what I expected. You know, you have these big incisions. I have scars that run from here to here on both of my breasts & I expected to feel those, but there’s actually a lot of nerve damage so you don’t really feel the incisions, but there’s a lot of muscle soreness because your muscles are sort of put in s different place. 

So, how did your dad feel about it?

So he was actually really supportive through the whole process. I actually attribute a lot of my confidence & being able to do this to him preparing me for it. You know when I say that my dad told me when I was 10, that cancer was something that I would have to be conscious opf as an adult and keep track of, a lot of people are like, “Ugh. Why would you tell a 10 year old that?!” but for us, cancer was a part of our everyday lives and its easy for outsiders to not understand just how normal it feels to you at that point, when you grow up with that. So, he was very supportive. I think he was actually more scared than I was about me going into surgery.

What do you wish you had known?

The biggest thing that I wish I had known more about going into the double mastectomy was kind of, what the full recovery process looked like and what to expect with that. They tell you, that it’s about six weeks before you can go back to work, the drains stay in for about a month or two, just depending on how long you have the JP drains. 

All of those things are apparent but there’s kind of this “Part Two” of the healing process that I don’t think a lot of people talk about, which is kind of the reconstructive side of things, and then after the reconstruction depending on what that process looks like for you: getting your strength back, getting your muscles back, getting comfortable with the way you look again, being able to stretch and turn certain ways. A lot of the muscles in your chest are influenced when you have a mastectomy so doing things, like stretching your arm backward, becomes harder; sleeping on your stomach...all of these things that we don’t really think about that your chest is tied to, that took a lot longer. It was maybe a year before I could work out, like normal. I hurt myself twice trying to get back into it. 

So if someone is thinking about getting tested or someone who just found out that they are BRCA positive, what’s the first thing they should do?

The first step is to probably call a doctor, and then if you aren’t totally aware of your options yet, usually the clinic that you get the testing through or the doctor who helped set you up with that process will have some resources that they can send you as well.

Do you think that there is a negative stigma that comes along with opting for this surgery? I remember when Angelina Jolie went through this and it seemed that there was a lot of backlash. Why do you think that happened?

I think it’s a mix. First of all, I think that people don’t understand exactly what genetic mutation means. People just think, "Oh their mom had it so now you think you’re gonna have it." They don’t realize that someone with BRCA mutation has an 80-90% chance of getting cancer, which is insane! I mean, those odds are not in anyone’s favor. So, the first thing I think is just a lack of awareness of exactly what it means and why people do it.

The second thing is that people just don’t understand that once you’ve had cancer once, the likelihood of you getting it again is super high. So for those people thinking, “Oh you can just catch it early and get on top of it,” well, now you’ve got cancer and the likelihood of it coming back is a lot higher. So, people don’t quite understand.

I think the third piece is that people sexualize women in a lot of ways, and they don’t understand why you would want to remove a part of your body that is often desirable. That’s something I got a lot of questions about like, “why would you do this? You’re slapping God in the face!” I had multiple people tell me that.

I just had to tell them that there are other things in life that are more important than...having...boobs. Especially if you’re having children and things, there is a functional aspect to having breasts, but on the other hand of things you want to actually be there (alive!) for your kids & there are other options. 

Can you get breast cancer now?

Yes! So I am still at risk but my risk is much lower than the general population. So a normal person, who does not have a family history, is not at high risk, does not have a genetic mutation has around 12% chance of getting breast cancer, which seems low until you consider how many people there are in the world, and the number of women that have breast cancer every year. And a large percentage of them, I think about 5-10% of them actually have a genetic mutation or some form of predisposition that let them know that they should be aware of it. Even though I have taken preventative measures, I still have some tissue.

Also the other side of the BRCA mutation that I think a lot of people don’t talk about is the ovarian cancer risk, which is around 50%. If someone is worried about their family history, or thinks “Oh this is something I might want to get tested for," because of the severity of this diagnosis and the decisions that would come from it, I would highly recommend going through your doctor or some form of genetic counselor. 

What was the biggest challenge before, during and after surgery?

Yeah, so I would say before it would have to be just feeling confident in my decision. There were some many voices around me just trying to give me their opinions or questioning why I was doing it, without really understanding it.  I had to keep reminding myself that I have been entrenched in this information for ahwile. I’ve done the research. I’ve talked to doctors. I know what I’m doing...but sometimes, especially when you’re young and I was 21 at the time of my surgery, people question how smart you are, how experienced you are. I just had to remind myself that it was my decision to make and the decision I made isn’t going to be right for everybody else. There are plenty of women who find out they have the BRCA mutation, who decide not to take preventative measures, or they decide to take different ones and so that was probably the hardest part, leading up to it…

During? It was definitely the JP drains. I hated them so much...which is why It’s great that you have a product for that!!! Hahaha, but yeah, during the recovery I had four drains and they would get stuck on everything!

I didn’t have anywhere to put them, so I’d just stick them in the pockets in my jeans and then I would forget. And then I would go to do ordinary things, like go to the bathroom and then I would accidentally pull them...and yeah, they were horrible. And they were gross, as I’m sure many people know. So, during that was probably the worst part...and not being able to sleep on my stomach was horrible. I’m a stomach sleeper and it's not really something that you think about beforehand. 

Then after, was really just adjusting to having a new body. I was always very active & I had to ease back into working out. For lifting weights, I had to start with 2 pounds, and I even hurt myself with 2 pounds. It was very slow.

Then also, just the physical confidence aspect of it. I knew what everything was going to look like. I looked at pictures. I did the research. I was ready to go, but still. The first time you take the bandages off and see what everything looks like especially before the reconstructive surgery, it’s a little jarring. There were some moments where I had to pull myself out of that and remind myself that it was for the best. 

There were some unexpected benefits of having the reconstructive surgery...like, I never wear bras. My boobs just stay in place, and I don’t have nipples so nothing shows through! I mean, I’m not wearing a bra now! You just don’t need them so that’s nice. You've really gotta bank on those small wins.