Why I Had a Mastectomy at 21
Updated: Oct 20, 2022
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 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.
Table of Contents:
If you read nothing else in this post, please read the "Curious about your own health" section. Let's get started.
Losing Mom
I was five 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.
Several months went by. Friends, family, and hospice workers came and went. I was at 5th-grade camp when she "left." That's what I called it then.
My teacher pulled me out of camp and drove me home. I remember being angry that he wouldn't tell me what was going on. I suppose I already knew what happened at that point, but I wanted someone to be honest with me. When we 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. We mourned her the day she told us she wasn’t going to be around much longer and we had watched her suffer through treatments for years before and after that day.
The point of sharing this information isn't to get you to pity me. I share it so that, hopefully, you can understand why I grew up scared as hell of going through the same thing.
For my family breast cancer wasn't something we did a charity walk to raise money for once a year. It was real, it was hell, and I was terrified of it.
What's My Risk?
Fast forward six years. I'm 16 and making my first visit 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:
Both my mom's sister and her aunt had breast cancer too. Once two or more family members have breast cancer, it's a lot more likely there's a genetic mutation at play.
My mom was only 34 when she was diagnosed. By the time she was diagnosed she was already pushing stage IV, meaning the cancer had been present for some time. BRCA mutation carriers statistically have an earlier age of onset.
Because there was a pattern of breast cancer there was a good chance my mom’s cancer was the result of a genetic mutation. We later found out my aunt had tested positive for the BRCA2 mutation several years earlier.
If my mom carried the mutation, there was a 50% chance I inherited the mutation depending on if I received 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 genetic counselors, my dad, and my step-mom while we discussed every illness my family had ever incurred. They suggested I receive genetic testing to determine if I carried the BRCA mutation responsible for an increased risk of breast and ovarian cancer.
I decided that day that I would take preventative measures if I carried the mutation.
Finding Out I’m a Mutant
Fast forward another two years. I'm 18 and a freshman in college when I'm finally able to pursue genetic testing. A quick blood draw and my sample was sent off to a lab for analysis.
There was a 50/50 chance I had the BRCA2 mutation. If I had it I'd become what they call a "high-risk patient." Here's what that means:
My lifetime risk of breast cancer would increase from the average of 13% to a <69% chance. For BRCA1 mutations this number goes up to <72%.
My lifetime risk of ovarian cancer goes up from the average of 1% to a <17% chance. For BRCA1 mutations this number goes up to <44%.
High-risk patients tend to have an earlier age of diagnosis. My mom was only 34 when she was diagnosed and her cancer was already metastatic, meaning it had spread to other parts of her body and her chance of survival was low.
Insurance covered a large portion of the genetic testing cost. If you have a direct family member who’s already tested positive for a mutation, like my aunt, it’s more affordable to get the testing done. In 2011 we paid around $400 out-of-pocket. If my aunt hadn't already tested positive for the same mutation the cost would have been closer to $3,500 out-of-pocket. However, testing has become a lot more affordable and accessible since then.
I waited six weeks for my results. One sunny day during my first quarter in college I walked out of stats class and saw a call coming in.
"You’re BRCA2 positive." Awesome.
*Note on genetic testing: Genetic professionals recommend going through a medical testing lab for testing that could lead to preventative action and not relying on home testing kits that are now on the market.
Options for Prevention
I started seeing a high-risk doctor to assess my options for prevention shortly after getting my results. 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 doctors. Read some materials. Reflect on what you want your life to look like. And make a decision. You’ll figure it out, I promise.
I had to advocate for my decision. My surgeon wanted me to take option one. He said: “Most women just want to get through their 20’s first. They don’t want to worry about their appearance changing.”
Because high-risk patients have an earlier age of onset, I wanted to make it not only through my 20s, but my 30s, my 40s, and so on. Of all the possible negative outcomes a change in appearance was the lesser of the evils.
Knowing my mom was diagnosed at such a young age and having 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. After a long argument with my doctor and reassurance that I made this decision when I first learned about mutations and not that morning, he finally agreed.
We set a date for May 11, 2015, the week after my college graduation.
Prophylactic Bilateral Mastectomy
Let's break this operation down a little:
Prophylactic = preventative
Bilateral = both sides, meaning both breasts in this instance
Mastectomy = a surgical operation to remove a breast
The morning of the procedure 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. Most of my nerves were damaged during the operation so I couldn’t feel the 8-inch incisions across each side of my chest. The cuts looked scarier than they felt. All I felt was immense 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 each of my sides, four in total.
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 it. 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 ribs. Their purpose was to prevent fluid buildup while my chest healed. They were gross, hard to conceal, and got stuck on doorknobs all the time. I wasn't allowed to shower normally until they were out because they were open wounds. I hated those things. This photo was after I already had two removed.
Breast Reconstruction
Breast reconstruction is the process of using plastic surgery to rebuild breasts after a mastectomy. This procedure can be a big part of the healing process for mastectomy patients while others choose to stay flat.
After my initial six-week recovery period I started the reconstruction process. When I had my mastectomy a pair of temporary implants called expanders were put in my chest underneath my pectoral muscles.
This is called UTM or "under the muscle" reconstruction. The expanders were hard as rocks and not shaped very naturally. Every week a nurse would put a large needle into a port on both of my expanders and inject fluid to "inflate” them. This sounds painful, but nerve damage has its perks I guess. I didn’t feel a thing aside from a little muscle soreness in the days following. This was a several-month-long process so I stuffed my bra to make my clothes fit in the meantime.
After my expanders reached the right size, I waited. It took six months total to complete the expander process. I wasn’t able to get back to my original size because my skin thinned out as it was stretched- something to keep in mind and talk to your doctor about if you're having this procedure.
The implant exchange was easier. A quick surgery to swap in the permanent implants followed by a 1-2 week recovery period. The permanent implants were also placed under my pectoral muscles.
Both surgeries cost around $90,000. Crazy, I know. But my insurance covered almost all of it. I was left with about $5K in bills that I made small payments on over the last few years, finally paying off the total cost in 2021.
Breast Reconstruction Pt. 2
In July 2021, I revisited my reconstruction to move the implants out from underneath the pectoral muscles. The goal was to achieve more comfortable results without stretching my pec muscles over the implants which never felt comfortable with my active lifestyle. I always felt like I was being held in, wrapped in something tight. I'm not sure how else to explain it.
I found out when I woke up from the surgery that both of my implants were ruptured so it was lucky I chose to move forward with the revision.
My surgeon repaired my pectoral muscles by sewing them back down, placed new implants above the muscle, and used a process called fat grafting to improve the final appearance and allow for a smaller implant to be used.
Fat grafting is the process of harvesting fat cells from other parts of the body and injecting them into the chest. I had to go back after the first procedure for one additional fat grafting session since the body absorbs about 30% of the fat cells that are transferred.
I'm really happy with the results and am so glad I took the plunge to improve my comfort.
Insurance covered the cost of the revisions so I only had to pay my insurance plan's annual deductible. Under The Women's Health and Cancer Rights Act insurance companies should cover all reconstruction and revisions for mastectomy patients. My surgeon was out-of-network but was kind enough to not balance bill me the 20% of the cost that my insurance wouldn't cover after the deductible.
I haven't gone forward with nipple reconstruction because I haven't seen much work in that field that looks realistic enough to justify going back to wearing bras regularly. So yeah, you read that right, I don’t have nipples. I did find one tattoo artist in Ireland who does AMAZING restorative tattoo work who I may schedule with one day.
Physical and Emotional Healing
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 numerous months of reconstruction over 7 years. The second round of reconstruction was painful and long and had complications.
It took 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 through it all and I haven't looked back since.
Since my mastectomy, I’ve felt like a giant weight has been lifted knowing my risk is lowered. While my risk is now lower than the general population, 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.
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 six 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 follow-ups I have to get usually cost me $300 out of pocket each time. Gotta love American healthcare.
Starting next year at age 30 I'll double up and get an ultrasound and a CA125 blood test every six months.
By age 45 I'll have my ovaries and fallopian tubes removed. This procedure is called a prophylactic bilateral salpingo-oophorectomy— what a mouthful. It took me a few years but I think I'm finally able to pronounce it correctly.
This procedure is recommended by age 35 for BRACA1 carriers and by 45 for BRCA2 carriers. While I still have some time before I reach the cap on the recommended age, I'm also growing increasingly tired of the anxiety and fear that come with my annual scans as I get older. So I'll probably get ahead of that in a few years.
Curious About Your Own Health?
Early detection saves lives. Here are some numbers:
Only ~5-10% of breast cancer cases are tied to genetic mutations. That means more than 90% of breast cancer cases are not tied to family history. Prioritize monthly self-exams and annual mammograms regardless of your family history.
You could have a 99% survival rate if you catch your cancer before it spreads. The longer cancer exists in your body the worse your chances of survival get. Check out the data below.
How to be proactive with your health:
Complete a monthly self-exam. Don't know how? Check out this guide from KnowYourLemons.org for direction! They also have an awesome app that will send you reminders and walk you through the self-exam process.
Schedule 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. If cost is a hurdle, here's a resource to find free mammograms.
Have discussions about your family history of cancer to identify risk factors.
What if I have a family history?
If you're worried you may be at a higher risk based on your family history:
1. Have a conversation about the history of cancer with your family
2. Do some research. Here are a few resources to get you started:
Risk Factors: This resource shares factors that could increase your risk.
Risk Assessment: This KnowYourLemons app has a risk assessment quiz that helps determine your risk level and provides you with a custom screening plan.
Screw You Cancer: Caitlin Brodnick shares her life-changing decision to have a preventative double mastectomy after learning she’s BRCA1-positive. This video series was really helpful for me as I figured out what I was getting myself into.
3. Talk to your doctor and a genetic counselor
4. Consider genetic testing
Make a decision that is right for YOU about how you can best be proactive with your health.
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 or TikTok for monthly self-exam reminders.
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Amanda Hagley
hagleyamanda@gmail.com