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Why I had a mastectomy at 21

Updated: Oct 14

mas·tec·to·my [ /maˈstektəmē/ ] noun. Surgery. 1. a surgical operation to remove a breast.

I was 21 years old when I had a prophylactic bilateral mastectomy. 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? Let me tell you the story, starting from the very beginning this time.


If you read nothing else in this post, please at least check out the "Curious about your own health" section. Let's get started.


Losing Mom


I was six years old when my mom was diagnosed with breast cancer.


At that age, I didn’t really understand what that meant. I knew my mom 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 nine 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 being pissed off. I suppose I already knew what 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.”


The days that followed were filled with visitations. Funerals. Casseroles. 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.

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 make that scary first trip to the OB/GYN. This is the first time I really had to consider the potential risk of hereditary breast cancer. Here's what my OB/GYN told me:

  • My mom's sister had breast cancer too and tested positive for the BRCA2 genetic mutation.

  • Once two or more family members have 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, 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).

While there was a case to be made for hereditary risk in my family, that's not always the case.


Everyone should do self-exams and get their yearly mammograms- here's why:

  • 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." 90-95% of breast cancer cases have no hereditary mutation at play. Do your monthly self-exams.

“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 to get the testing done. I decided that day that I would take preventative measures if I carried the BRCA gene mutation.


Finding Out I’m a Mutant


Fast forward another two years. I was a freshman in college when I was finally allowed 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%.


Insurance covered most of this test, but if you have a direct family member who’s already tested positive for a mutation (like my aunt) it’s easier and more affordable to get the testing done.


I waited six weeks for my results. One sunny day during 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.


What Now?


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” or a "previvor."

  • The average woman has a 12% chance of getting breast cancer. High-risk patients have an 87-90% chance of getting breast cancer and a 30-50% chance of getting ovarian 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 her cancer was already metastatic, meaning cancer had spread to other parts of her body and her chance of survival was low.


I started seeing a high-risk doctor shortly after getting my results to assess my options. He told me I had a few choices:


IMPORTANT: This was my 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.


I had to fight my doctor for my decision. He wanted me to take option one. 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 having an earlier age of onset, 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 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.


Surgery 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 was different than I expected. All of my nerves had been damaged during the operation so I couldn’t feel the 8-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 was jarring, to say the least. You can do 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 dark purple incisions. I had two surgical drains coming out of both of my sides.


The good news is that my initial recovery was fairly quick. I was off the painkillers and muscle relaxers within a week. I think part of the reason I recovered so quickly was that 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 also wasn't allowed to shower normally until they were out because they were open wounds. I fuckin’ hated those things.

Breast Reconstruction


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. They were hard as rocks and not shaped very naturally. Every week I would go see a nurse who would put a large 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 fit during reconstruction, so I stuffed my bra.

After my expanders reached the size I wanted, I waited. 6 months of these uncomfortable expanders. (Note for anyone getting this procedure: I wasn’t able to get back up to my original size of a DD because my skin started thinning out as it was stretched- something to keep in mind and prepare for.)


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 $90,000. 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.


Physical and Emotional Healing


So here we are 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 for months. 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 knowing my risk is lowered and this isn’t something I have to worry about doing later in life. My risk is lower than the general population, but there's still risk. So I do my monthly self-exams too.


What's Next: Ovarian Cancer Risk


The other half of the BRCA mutation is that you also have an increased lifetime risk of ovarian cancer, about a 50% chance.

For now, I get yearly ultrasounds to check my ovaries and make sure they're healthy. If my doctor sees something concerning, 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. Unfortunately, insurance only covers one of these ultrasounds a year, so any followups I have to get end up being $300 out of pocket each time.


Around age 35, I'll 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 a little longer 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!


If you're worried about a family history of breast or ovarian cancer:

  1. 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.

  2. Talk to your doctor and a genetic counselor

  3. Consider getting genetic testing done

  4. 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:


IMPORTANT: Early detection saves lives. Here are some numbers:


1. Only ~5-10% of breast cancer cases are hereditary. This means you should do self-exams regardless of family history


2. Early detection is key! The longer cancer exists in your body the more it spreads and the worse your chances get:



How to be proactive with your health:

  • Complete a monthly self-breast exam

  • Encourage the people in your life to do a monthly self-exam

  • Get a yearly mammogram once you hit age 40 (or 10 years prior to the age of a diagnosed family member if you have a family history)

  • Not sure how to do a self-exam? I made this for you!



I’m not a professional, but I’m happy to share my experience. Questions, comments, concerns? Reach out any time. You can also follow me on Instagram for monthly self-exam reminders.


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Amanda Hagley


hagleyamanda@gmail.com

@amandahagley


*This post was updated Oct 12, 2020

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