By: Amanda Hagley
I was 21 years old when I had my prophylactic bilateral mastectomy and reconstruction. I had just graduated college a week before the operation and, no – I didn’t have breast cancer. So why the hell would I do this to myself? Let me tell you the whole story, starting from the very beginning this time.
I was 6 years old when my mom was diagnosed with breast cancer. At that age, I didn’t totally understand what that meant. All I knew was she was sick a lot and some days she didn’t want to get out of bed. I knew I felt like I was helping if I could rub her back while she got sick into the toilet each night. I knew my mom didn’t have hair like the other moms and sometimes the other kids would ask why.
I was 9 when my mom told me she was going to die. We were camping and I cried for hours. That’s the day I really mourned my mom’s death. It was all a whirlwind from there.
Several months went by. Friends, family, and hospice workers came and went. I was at 5th-grade camp when she left. I was playing basketball when my homeroom teacher came and pulled me aside. “You need to grab your stuff so we can take you home, something serious is going on.” I ran to grab my jacket from the court and my friend April asked what was going on, “Something’s wrong with my mom,” I replied, knowing without having to be told.
My teacher drove me home. I remember that Mr. DuMonte kept patting my arm but not saying anything. I remember being pissed off. I suppose I already knew what had happened at that point. When we finally arrived at the house my little brother, seven at the time, was standing out front by himself. “She’s gone.” That’s all he said.
The days that followed were filled with visitations. Funerals. Casseroles. Trying not to cry so people would stop worrying about me. What people didn’t understand was that my mom had been gone for months. I had mourned her death the day she told us she wasn’t going to be around much longer and watched her suffer for quite some time.
The point of me sharing this information is so that now you can hopefully see why I grew up scared as hell of ever having to go through the same thing.
What’s My Risk?
Fast forward six years. I’m 16 and my periods are all out of wack coming twice a month. Like most girls, I make that scary first trip to the OB/GYN to talk about going on the pill to regulate my periods. This is the first time I really had to consider my future and the potential risk of hereditary breast cancer. Let me break down what my OB/GYN told me:
- My mom’s sister had breast cancer too and tested positive for the BRCA2 genetic mutation.
- Only about 5-10% of breast cancer cases are genetic. This means having one family member with breast cancer doesn’t necessarily mean you’re going to get it too.
- This also means that you’re not out of the woods because it doesn’t “run in the family.” Read: do your monthly self-exams.
- Once you get two or more family members with breast cancer, it becomes a lot more likely there’s a genetic mutation at play.
- Because my mom and her sister both had breast cancer, we knew there was a good chance my mom’s cancer was the result of a genetic mutation.
- If she carried a mutation, there was a 50% chance I could also have that mutation (depending on if I get that gene from my mom or my dad)
“You need to go see a genetic counselor and get on top of this.”
My doctor was adamant so I went. I sat for hours with two women, my dad, and my step-mom while we discussed every illness my family had ever incurred. They suggested I get genetic testing to see if I carried the BRCA mutation responsible for hereditary cases of breast cancer.
Then they told me I had to wait until I was 18. I decided that day that I would take preventative measures if I carried the BRCA gene mutation.
Finding Out I’m a Mutant
I was a freshman in college when I finally went to get genetic testing. A quick blood draw was all it took.
Like I mentioned earlier, there was a 50/50 chance I had the mutation. If I had the mutation, my lifetime risk of breast cancer would go from 12% (the risk of the average woman) to 87-90%. Those odds really weren’t working in my favor.
Insurance covered most of this test, but if you have a direct family member who’s already tested positive for the BRCA1 or BRCA2 mutation (like my aunt) it’s easier and more affordable to get the testing done because they know exactly where to look for the mutation.
I waited six weeks for my results. One sunny day my first quarter in college I walked out of my stats class and saw a call coming in.
“You’re BRCA 2 positive.” Awesome.
*Note on genetic testing: Most medical professionals recommend going through a medical testing lab and not relying on the home testing kits that are now on the market for this type of testing.
Alright, alright so I’m BRCA2 positive. What does that mean? Let me break it down for you:
- Now I’m considered what they call a “high-risk patient.”
- The average woman has a 12% chance of getting breast cancer. High-risk patients have an 87-90% chance of getting breast cancer. I’m not messing with those odds.
- High-risk patients tend to get diagnosed with breast cancer at a younger age. My mom was only 36 when she was diagnosed and was already late stage III, meaning her chance of survival was low.
High-risk patients have an 87-90% chance of getting breast cancer.
I started seeing a high-risk doctor shortly after getting my results to assess my options. He told me I had a few choices:
- Option 1: Do nothing and keep an eye on things so if I get breast cancer we can catch it early Why this didn’t work for me: Okay so we keep an eye on it and find something. Early detection means better treatment options and a higher chance of survival but… I still have cancer. Once you have cancer once you’re 10x more likely to get it a second time. Nope.
- Option 2: Preventative chemotherapy Why this didn’t work for me: Remember that paragraph earlier talking about how sick my mom was on chemo? Yeah, no thank you. It would be a lower dosage but I was still out. Chemo scared the shit out of me.
- Option 3: Have a prophylactic bilateral mastectomy Why this option did work for me: It reduced my risk by 95% putting my personal risk lower than the general population. It’s permanent. It’s pretty damn effective.
IMPORTANT: This was my personal decision. What’s right for me isn’t going to be right for everyone. Talk to your doctor. Talk to yourself. Read some shit. And make a decision. You’ll figure it out, I promise.
An interesting point here is that I had to fight my doctor for my decision. He wanted me to take option 1. He said and I quote: “Most women like to just get through their 20’s first. They don’t want to worry about their appearance changing.”
With high-risk patients typically having a younger age of onset, I decided I wanted to make it through not only my 20’s, but also my 30’s, my 40’s, and so on.
I knew if I waited I would find every reason not to do it. Of all the possible negative outcomes, a change in appearance was the lesser of the evils.
With my mom getting diagnosed at such a young age and a whole life ahead of me that would allow me to make excuses to put off the operation, I knew it was then or never. So after a long argument with my doctor and some continued reassurance that I made this decision when I first learned about mutations and not yesterday, he finally agreed. We set a date for May 11, 2015.
The Big Day
I only cried once.
The operation was four hours long and I stayed one night in the hospital. I was on so many drugs I didn’t know what was going on, what time of day it was, or who was in the room. I didn’t feel any pain until the morning.
When I woke up the pain different than I expected. All of my nerves had been damaged during the operation so I couldn’t actually feel the 6-inch incisions I had across each side of my chest. The cuts looked a lot scarier than they felt. All I felt was immense muscle soreness.
The first time I took my bandages off after the procedure was jarring, to say the least. You can do all the research. You can know what things are going to look like. But seeing yourself for the first time post-op is not an easy thing. Where my chest had once been now sat two deflated surgical expanders, each slashed with deep purple incisions. I had two surgical drains coming out of both of my sides and couldn’t lift more than two pounds for months.
The good news is that I recovered quickly. I was off the painkillers and muscle relaxers within a week. I think part of the reason I recovered so quickly was because I was bored. I watched so many seasons of ‘My 600 Pound Life’ you wouldn’t believe. My doctor told me I could drive again whenever I got off the pain meds. So I got off the pain meds.
The worst part about recovery was the JP drains. I had two coming out of each side of my body. Their purpose was to prevent fluid buildup while my chest healed. They were gross, hard to conceal, and they got stuck on doorknobs all the time. I fuckin’ hated those things.
After my initial recovery period (about 6 weeks) I started the reconstruction process. When I had my mastectomy a pair of temporary implants called expanders were put in my chest. Every week I would go see a nurse who would put a big needle into a port on both of my implants and inject fluid to “inflate” them. This sounds painful I know, but nerve damage has its perks I guess. I didn’t feel a thing aside from a little muscle soreness, but it was a several month-long process. I stuffed my bra to make my clothes fit in the meantime.
None of my clothes ft during reconstruction, so I stuffed my bra.
After my expanders reached the size I wanted (I wasn’t able to get back up to my original size of a DD because my tissue started thinning out) I waited. 6 months of these weird shaped expander boobs.
The second surgery was easier. A quick exchange to swap out the expanders for my permanent implants and a short recovery period.
Both surgeries ended up costing around $90K. Crazy I know. But my insurance covered almost all of it. I only ended up with about $5K left in bills that I’ve been making small payments on over the last few years.
So here we are several years later. I never went forward with nipple reconstruction because, if I’m being honest, not having to wear a bra if I don’t want to has been pretty stellar. So yeah, you read that right, I don’t have nipples. Getting the nipple reconstruction has crossed my mind and might be something I decide to do in the future.
Total recovery, both physical and emotional, was slow. It was frustrating. I couldn’t lift my arms or sleep on my stomach. I went through months of cosmetic reconstruction. It took me years to regain my upper body strength. Years to wear a top that showed my scars without thinking twice about it. Years to regain confidence in my physical appearance. But I got there.
Since my surgery, I’ve felt like a giant weight has been lifted off my shoulders knowing that my risk is lowered and this isn’t something I have to worry about doing later in life.
The other half of the BRCA mutation is that you also have an increased risk of ovarian cancer, about a 50% chance to be exact.
For now, I get yearly ultrasounds to check my ovaries and make sure they’re healthy. If my doctor sees something, I get a CA125 cancer antigen blood test and go back every 6 weeks for follow up ultrasounds until the spot goes away. So far, it’s only been cysts.
Around age 35, I’ll also have my ovaries and fallopian tubes removed. This procedure is called a prophylactic bilateral salpingo-oophorectomy. What a mouthful. I’ll be working on pronouncing that correctly for the next 10 years.
I’m not jumping into this surgery as quickly because there are obvious implications on the ability to have kids. While I’ve never been adamant about having kids, I also don’t want to take away the ability to change my mind prematurely. So we’ll wait on that one.
Curious about your own health?
This was the right decision for me. It might not be the right decision for you though. My advice: do some research ladies!
If you’re worried about a family history of breast or ovarian cancer:
- Do some research. Here are a few resources for you: – Your OB/GYN: they went to school for like, 30 years so they know some stuff. – Bright Pink: Bright Pink is on a mission to save women’s lives from breast and ovarian cancer by empowering them to live proactively at a young age. They have a ton of great resources on prevention and early detection. – Screw You Cancer: Caitlin Brodnick, a 28-year-old comedian living in NYC with her husband, shares her life-changing decision to have a preventative double mastectomy after learning she’s BRCA1-positive. This resource was really helpful for me as I was trying to figure out what I was getting myself into. – National Cancer Institute: Check out some hard facts and scientific data here.
- Talk to your doctor
- See a genetic counselor
- Consider getting genetic testing done
- Make a decision that is right for YOU about how you can best be proactive with your health
Steps everyone should take regardless of family history:
- Do a monthly self-exam
- Encourage the people in their lives to do a monthly self-exam
- Talk to your doctor about getting a yearly mammogram once you hit age 40 (or 10 years prior to the age of a diagnosed family member)
- While a mutation does mean a single individual’s cancer risk is much higher, only about 5-10% of breast cancer cases are caused by genetic mutations. This means the other 90-95% of breast cancer cases have NO TIE to family history. That’s why it’s important for ALL women to do self-breast exams. Not sure how? I made this for you!