5 Things I Wish I Knew Before My Double Mastectomy

When you first get your cancer diagnosis or learn that you are a carrier of a harmful genetic mutation it can be overwhelming. Your world is suddenly turned upside down, leaving you with tons of decisions to make and research to do. When I first found out that I carried the BRCA 1 genetic mutation at 22 years old I was so overwhelmed. The last thing I wanted to do was intensive research—all I wanted to do was run away.

Now four years later, I consider myself a bit of an expert. I have done the research and underwent a preventative double mastectomy. I’ve spoken with some of the best doctors in the world and met thousands of women at various stages of their diagnosis and learned so much from their experiences. I even co-founded a nonprofit organization that puts together free events and wellness retreats for young women affected by cancer.

From the beginning of my diagnosis to now, I have learned a lot and there are a few things I wish I had known from the start.

  1. SPEAK UP 

It is so important for us to be our own advocates as we navigate our diagnosis. For a long time, I thought that I had to go along with whatever my doctors told me. Though I love my doctors and trust my team—no one knows my body as well as I do. Which is why if something is important to you or if something just doesn’t feel right, you must speak up!  Do not be afraid to question your doctor or go for a second opinion. For example, when one of my Breasties was planning her double mastectomy her doctor told her that he was going to make the incisions across her chest. However, she knew that my incisions were done along the creases of my breasts and that’s where she wanted her incisions to be done. Instead of going along with what her doctor said, she asked if the incisions could be done where she wanted them. The doctor was fine with that and everyone was happy! If you don’t ask, you’ll never know! We can’t be afraid to ask for what we want and to seek out a second opinion if you don’t get the answer you’re looking for or just want to be sure!

  1. BREASTIES

Speaking of Breasties—the above is a great example of the importance of finding a support system that can help you through. Friends and family are amazing, but having the support of women who have walked the same path and totally understand what you’re going through is invaluable and life changing. When I was first navigating my BRCA diagnosis I didn’t have anyone to talk to who had gone through this before me. I felt completely alone, as if I was the only young woman in the world to be making this decision. I wish I had had a community of Breasties who I could reach out to for love, support, and advice!

  1. REACH OUT

So how do you find Breasties to help you through?! You have to reach out! The internet makes connecting with people around the world incredibly easy. If you are feeling brave enough, I highly encourage reaching out to others who are also navigating their diagnosis. One easy way is to search hashtags on Instagram. Try searching, ‘BRCA’, or ‘Previvor’, or ‘Survivor’, or ‘Breast Cancer’. There are thousands of women sharing their stories on Instagram and I know they would love to connect with you! If you prefer to rely on friends and family for support, make sure you are reaching out to them! Do not be afraid to ask for help. No one can get through this alone and no one should have to. Tell your friends and family EXACTLY what you want/need from them. They are not mind readers. I promise they want to help, but they might not know what you need.

  1. SELF-LOVE

Self-love wasn’t something that I practiced before my surgery, but I wish that I had. My body changed so much after my double mastectomy and there were days when I didn’t even recognize myself in the mirror. At times, it was really hard for me to love and accept my new body and I really struggled. Something that helped me was positive body affirmations. Each week I would write down an affirmation on a post-it and stick it onto my mirrors. Every time I looked at myself in the mirror I would see the reminder to be kind to myself. I would repeat the affirmation in the mirror and it truly helped me connect with my new body. Over time I learned to love and accept my new body!

  1. EMOTIONS

The emotional aspect of my diagnosis was harder for me than the physical aspect. I wish I had known that I would struggle with anxiety and sadness after my surgery. Instead of talking through my fears and feelings, I kept everything in and acted like I was strong! I didn’t want to worry my friends and family. I think if I had talked it out, I would have been in a much better place! Do the emotional work BEFORE your surgery. Do not be afraid to express your fears and feelings. LET IT OUT!! You do not always have to be strong—it’s ok to be open and honest about your feelings.

Whether you are at the beginning of your journey with a cancer diagnosis, navigating life after cancer, or making preventative decisions, you are not alone. There are so many Breasties out there who would love to help you through—including me!!

Xo, @paige_previvor

 

 

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