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5 Things You Should Know About A Double Mastectomy

I often receive messages from women considering a prophylactic double mastectomy. I remember standing in their shoes so vividly — full of questions and a little nervous (ok, maybe a lot nervous)! Sometimes all they need is a little encouragement from someone who has been through it before to tell you that everything is going to be OK! And answer all the same questions I had too. So in honor of breast cancer awareness month I thought I’d share 5 things I normally share with women.

  1. There will never be a good time to have a double mastectomy. Ever. I hear this ALL the time from women who are planning for their surgery. Some women want to wait until they are done breastfeeding or done have all their children, some want their kids to be older or in school, some want to wait until after that wedding next summer — the list goes on. And trust me, I get it! I had my surgery 3 months after I had my son — who was born with a rare medical condition leaving him blind, and required emergency surgeries and lots of unique care. On top of that, I had an 18 month old daughter who loved to be held. Oh, and let’s not forget I had just returned from a 12 week maternity leave only to share with my boss that I would be going back out in a few weeks for another 6 weeks. And it was the beginning of the holiday season — missing my newborn baby’s first Halloween. There is never a good time, friends. Please don’t wait or put it off. Cancer does not care about your calendar.
  2. Find a doctor who will advocate for you. Insurance didn’t want to pay for my mammograms when I was 19 years old because I wasn’t over 40. Insurance also didn’t want to pay for a double mastectomy at 29 because despite my aggressive family history, I tested negative for the BRCA gene mutation (hear more about this here). My OB/GYN was the doctor who fought for me — he referred me to a genetic counselor who was able to run alternative risk assessment models to provide insurance the proof they needed to cover my surgery.
  3. A Ta Ta Party may be for you! Some women go through a grief process in losing their breasts. Whether you’ve breastfed your babies or maybe you just already have really great boobs, it can be difficult to say goodbye to your God-given breasts. So I highly recommend throwing a boob-voyage! For me, not only was a ta ta party a welcomed distraction from all of my thoughts and nerves swirling around the procedure, it was an awesome way to include my tribe in the process. Speaking of your tribe and support system, if your friends are asking how the heck they can best support you in your recovery, I recommend checking out this post.
  4. You will come out stronger than you ever thought you were capable of. All the time people would say to me “oh my goodness, you are so strong and brave!” and to be honest, I didn’t feel that way at all at the time! I did what I had to do and pushed myself through it day by day (with lots of support from my husband and friends). But in hindsight, I look back and say to myself “Woah! You were so brave and strong!” And for those of you with kids, this will be a remarkable opportunity to show your kids how strong their mama is too!
  5. Life WILL return to normal again. During the recovery process it will feel like life will never be the same. At times it may even feel like you’re in a dark whole and just want to get back to yourself. Guess what? You WILL! I promise that one day in the not too far future you will look back on the entire process and it will be a small (although significant) part of your story. Normal life resumes with one big exception — you will no longer live in fear of a breast cancer diagnosis.

Want to hear more about my experience? Check out this podcast. As a reminder, I want to give my disclaimer that my experience is from a prophylactic standpoint and I am NOT an expert — some of the information I shared I have learned secondhand from other women (so if you have specific medical questions — ask your doctor!). However, this episode is for anyone looking to take demystify this overwhelming process and to hear just how normal life can be post-mastectomy. 

North Carolina lifestyle blogger, Christina shares the 5 Things You Should About A Double Mastectomy! Check it out!

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Jill Hayslip

Wednesday 16th of October 2019

I need to pick your brain more on #2. I’m high risk and have seen a genetic counselor but they said that in order for me to qualify for a double mastectomy my mom would need to test positive for BRCA. They would then test me and if I was also positive we would go from there. I already know that my mom is negative. The genetic counselor ran the risk models a bunch of different ways and no matter what it still showed that I was high risk. I’ve been doing the mammogram/MRI cycle for 3 years now and I’m over it. Where do I go now?

Amy Warren

Thursday 17th of October 2019

I’m also happy to chat with you about this. I was high risk but not gene positive and mine was covered 100%! I was doing the mammogram/MRI rotation and losing my mind! [email protected]

Julia

Wednesday 16th of October 2019

this is awesome, thank you for sharing! information like this is always good to have in the back of your mind as well. i was wondering if you could, at some point, give an update on Thomas' eyes/vision? I have been following you since the very beginning and I just clicked on the link you posted about that day you found out about his condition. I didn't have a child at the time but I do now and I have all different sorts of feelings re-reading it! Can't imagine what you went through at the time.

Amy Warren

Wednesday 16th of October 2019

Your advice to me was invaluable. I’m almost one year post surgery and am SO glad I moved forward with this option. Thanks for all of your help. I’ve now been able to help several other women in the same situation.