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Why I Had a Mastectomy at 21

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 read the "Curious about your own health" section. You can click here to skip ahead. 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." That's what I called it then.


My teacher drove me home from camp and I remember being angry that he wouldn't tell me what was going on. I suppose I already knew what had 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 many people didn’t understand was that my mom had been gone for months. We had mourned her the day she told us she wasn’t going to be around much longer and had to watch her suffer through treatments for years before and after that day.


The point of me sharing this information isn't to get you to feel bad for me. I share it so that hopefully you can understand why I grew up scared as hell of ever having to go 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 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:

  • My mom's sister had breast cancer too, 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 (we later found out my aunt had tested positive for the BRCA2 mutation years before).

  • If my mom carried the same 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 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 many 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 pursue genetic testing. A quick blood draw and then my sample was sent off to a lab for analysis.


As I mentioned earlier, there was a 50/50 chance I had the mutation. If I had the mutation I would become a "high-risk patient" which results in the following:


  • High-risk patients' lifetime risk of breast cancer would go up from the average of 12% to up to an 87% chance.

  • High-risk patients' risk of ovarian cancer goes up from the average of 1-2% to up to a 54% chance.

  • High-risk patients tend to have an earlier age of diagnosis. 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.


Insurance covers most of the cost of genetic testing. 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 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 shortly after getting my results to assess my options for prevention. 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 really advocate for myself to 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. 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 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

That morning 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 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 also wasn't allowed to shower normally until they were out because they were open wounds. I hated those things.


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 many 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 I would go see a nurse who 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 size I wanted, I waited. It took about six months total to complete the expander process. (Note for anyone getting this procedure: I wasn’t able to get back to my original size of a DD because my skin started thinning out as it was stretched- something to keep in mind and talk to your doctor about.)


The expander to implant exchange surgery was easier. A quick second surgery to swap out the expanders for my permanent implants followed by a 1-2 week recovery period. The permanent implants were also placed under my pectoral muscles.


Both initial 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 made small payments on over the last few years, finally paying off the total cost earlier this year.


This year in July of 2021, I revisited my reconstructive surgery to move my implants on top of the muscle and supplement the overall shape with a process called fat grafting. The goal was to achieve more comfortable results without my pec muscles being stretched over the implants and to get a more natural look. It turns out both of my initial implants were ruptured so it was lucky that I chose to move forward with the revision.


So far I'm really happy with the results, although follow-up fat grafting sessions may be needed to achieve the final result. I'll write another post about revisiting reconstruction when the process is complete.


Insurance did cover the cost of the revisions so I was only out the cost of my insurance plan's deductible. Under The Women's Health and Cancer Rights Act insurance companies must cover reconstruction and revisions for mastectomy patients.



Physical and Emotional Healing


So here we are years later. I haven't gone forward with nipple reconstruction just yet because I haven't seen much work in that field that I feel looks realistic. 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 go see once things with the pandemic calms down.


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. 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 there and I haven't looked back since.


Since my surgery, 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, about a 54% 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 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 end up being $300 out of pocket each time. Gotta love American healthcare.


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 7 years.


I'm not jumping into this surgery as quickly because there are obvious implications on the ability to have kids and going into early menopause. 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?


Steps everyone should take regardless of family history:


Early detection saves lives. Here are some numbers:

  • Only ~5-10% of breast cancer cases are caused by genetic mutations. That means more than 90% of breast cancer cases are not tied to a family history. Prioritize monthly self-exams and annual mammograms regardless of 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? Lucky you! I have a tutorial below this section

  • 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

  • Have a discussion about your family history of cancer



How to be proactive if you have a family history of breast or ovarian cancer:


Here are some steps you can take if you're worried you may be at risk of having a genetic mutation based on your family history.

  • Have a conversation about the history of cancer with your family

  • Do some research. Here are a few resources for you: Risk Assessment Quiz: Learn your personal cancer risk in just 5 minutes and get a personalized prevention plan 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

  • Talk to your doctor and a genetic counselor

  • 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 for monthly self-exam reminders.


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Amanda Hagley


hagleyamanda@gmail.com

@amandahagley

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