A Journey to Mastectomy: Here’s What I Learned

One of the most significant life lessons I’ve learned happened when I was just 5 years old. My mom was diagnosed with and passed away from inflammatory breast cancer. She was misdiagnosed three times and despite several months of chemotherapy and radiation, it was too late.

Because I was so young, I don’t have many memories of my mom, but what I’ve learned about her experience has shaped my own health journey. It led me to start getting regular breast cancer screenings at 17 and eventually to undergo genetic testing.

I started looking for answers through means that didn’t exist at the time of my mom’s diagnosis. It started with routine breast imaging that detected suspicious masses that (thankfully) came back as benign. It then led to genetic testing results that indicated a cancer risk that isn’t yet well-known or understood. It then led me to heavily lean on the incredible online breast cancer community for answers and support. In doing so, I quickly learned that the “wait-and-see” advice I was getting was not a path I wanted to follow.

At 26 years old, I decided to have a prophylactic double mastectomy. I knew with that decision, I would also have to try to make peace with losing sensation in my chest, potentially being numb for the rest of my life. Even though it wasn’t something I wanted, I didn’t know of any other options at the time, and it wasn’t going to hold me back from getting the surgery.

When I found a care team near where I was living at the time, my mom’s experience once again came with me. My appointments felt rushed, and I didn’t feel like the care team truly heard and understood why I wanted to do this.

It wasn’t until I met with a different surgeon, whom I found through a good friend, that I felt validated. The difference was palpable right away; five minutes into the conversation, I knew this was the surgeon I wanted on this journey with me. She talked me through different options—including implant reconstruction with breast neurotization.

During my reconstruction, the surgical team would reconnect nerves cut during the mastectomy to nerves in my reconstructed breast, providing me the opportunity, over time, to regain sensation in my chest. She explained that doing both the mastectomy and reconstruction with neurotization on the same day was also possible (something the previous team said wasn’t). She helped me feel confident again that I was making the best decision for myself.

What I learned from my mom’s experience is the importance of feeling heard and seen in the health care setting. It’s a dynamic I was thrust into, and it took me years to learn what feeling “heard and seen” meant to me, but it ultimately made the biggest difference in finding what was right for me.

No matter what kind of reconstruction you’re considering with your surgeon — or even if you’re trying to navigate other complex health decisions — here are three tips to consider:

• Advocate for yourself. I can’t emphasize the power of self-advocacy enough. Bringing someone from your support system with you to appointments to ask questions and listen can make all the difference. And if a care provider tells you something isn’t possible, it’s OK to seek other opinions. Especially if you have the privilege of time like I did, you don’t have to stop at your first “no.” If I had, I wouldn’t have met the incredible care team who ended up doing my surgery.
  
  
• Learn about others’ experiences. This can be hard, especially when you’re confronted with horror stories and experiences that have gone wrong, so find the platform that you can feel the safest on. Social media, specifically Instagram, is where I was able to learn from and connect with others, leading me to learn about options I didn’t know existed and questions I didn’t know I should ask.
  
  
• Think about what you want your quality of life to be post-surgery. With all the information and decisions, the only thing on your mind might be to just get through, with “after” being an afterthought. But trying to find the space to think about what’s important to you and what you want can make a huge impact on the rest of your life. Whenever I feel my niece’s hand resting on my chest — something I could’ve not been able to feel if I lost sensation — I’m grateful for the type of reconstruction I had. Because of it, I’m able to forget about my mastectomy most days.

It’s amazing the resources and community we have now — something my mom didn’t have — and when both are used in a way that works for you, they can unlock many possibilities.

Remember that no matter where you are in your journey, you deserve to feel heard, seen and understood. And most of all, you have every right to the medical care and surgical care that is best for you and your body.

Bri Majsiak is a co-founder of The Breasties, the first all-inclusive nonprofit organization that creates community for survivors, previvors, thrivers and carevivors impacted by breast and gynecologic cancers.

This post was written and submitted by Bri Majsiak. The article reflects the views of Bri Majsiak and not of CURE®. This is also not supposed to be intended as medical advice.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.