Thursday, October 15, 2015

The Surgery Details: Prophylactic Bilateral Mastectomy

I am beyond speechless for the words of support, prayers, connections and stories you all have shared with me. There are no words to describe my feelings as the emails continue to pour in from readers who have been encouraged to schedule their annual mammogram, start doing monthly self breast exams, look in to BRCA testing because of their family history and even one super brave mama faced with this same decision move forward with her procedure!

I am trying so hard to respond to the emails I've received but am so overwhelmed (in such a good way) with the sheer volume! Just know that even if you haven't heard back from me I read every email, blog comment and Instagram comment and it has encouraged me more than you could possibly know.

I want to share a little bit more detail about the double mastectomy surgery, especially for those of you who are considering the procedure.

The date. First, we had to decide when it would be a good time to have the surgery after Thomas was born given the 6 week recovery time. We went through every scenario from combining my surgery with my maternity leave (doctors advised against that) to waiting until after the holidays were over. But the truth is there really is never a good time and I am more than ready to turn this page and get on with my life so we opted for the first available date that both of my surgeons were available. That brings us to October 27. And yes, my first thought when I got the call from the scheduler was "wait, will I be able to trick-or-treat with my babies?"

As for everything going on with Thomas, we obviously didn't plan for that! After his cataracts diagnosis we deeply discussed putting the surgery off until 2016 but ultimately decided it was best to still move forward with the date. And thankfully we are past Thomas' surgery hurdles and will have a week or so with contact experience under our belt before Matt has to do them solo for awhile. The eye doctor is also less than a mile from our house and we can walk in any time during business hours to get help with the contacts.

The surgeons. Picking both of my surgeons was a big decision (obviously). Not only do I want the best in Charlotte, it is important that the two surgeons work well together because they will be working on me at the same time.

I wanted the smartest, nerdiest and most experienced surgical oncologist I could find. From there we had the same requirements and more for my reconstructive surgeon. In addition, I wanted my reconstructive surgeon to specialize in well, reconstructive surgery (not just boob jobs)! Bonus points for Duke education.

Anytime I've told someone in the medical community who my surgeons are their response has been "oh yes! you have the absolute best duo!" I'm pretty sure everyone thinks they have the "best" doctors but I really truly believe mine are and I've been so happy with my decision so far.

The options. The amount of options (and decision trees that come with each option) was overwhelming and you can easily make yourself sick analyzing each one. We were peppered with so many difficult questions while finalizing the details of my surgery, many of which kept me up at night. Which procedure should I choose? How do I want my breasts to be reconstructed? Will I keep my nipples? These were not easy decisions. And not that I have boobs that would win any sort of contest, but all of a sudden I became very attached to them once the reality of losing them set in.

The final decision...a prophylactic bilateral mastectomy with nipple and skin sparing, tissue expanders and reconstruction.This requires two separate surgeries.

The nipples were the hardest (and most complicated) decision. I decided to keep 'em since my doctor said I'm a good candidate for a nipple-sparing mastectomy. This does however give me a 1% risk of getting cancer and there's also a slight chance of nipple necrosis, which means they could die from the trauma and reduced blood flow immediately following surgery. Despite these risks, I had read and been warned that this type of surgery can be very psychologically damaging to a woman and this option still seemed more natural than the other options which included no nipples, prosthetic nipples or tattoo nipples. See what I mean about the decision trees that come with each option? Overwhelming. 

The surgery. Very long story short, during the first surgery, the surgical oncologist will make an incision underneath the fold of my breasts and remove every bit of tissue (down to the dermis) in my chest. During this same time the reconstructive surgeon will sew in pockets of surgical mesh between my skin and chest muscle to hold tissue expanders. A breast tissue expander is an inflatable breast implant designed to stretch the skin and muscle to make room for a future, more permanent implant. 
 
The reconstructive surgeon will then sew in 4 surgical drains. These drains consist of a small plastic reservoir bulb connected to about 4 feet of flexible drainage tubing. So I'll have 4 drains hanging out of my chest that are about 3 feet long each. Their purpose is to remove fluid from the surgical wound through mild suction. From what I’ve been told the drains are the absolute worst part. I will literally have these suckers (no pun intended) hanging out of my chest for three to four weeks. Several times a day the fluid has to be measured and recorded until I hit a certain number required for them to be removed. And Dr. Matt will have the lovely job of emptying them and cleaning them. For better or for worse, right? 

The entire surgery should take between four and five hours and I’ll be in the hospital for one to two nights to recover. 

After the drains are removed at the end of November I will visit my reconstructive surgeon every few weeks to slowly fill my expanders with saline. The tissue expanders have a tiny valve mechanism located inside the expander so the doctor can inject the salt-water solution to gradually fill the expander over several weeks or months. Thankfully the expanders will have some saline already in them during the first surgery so I won’t be completely flat when I leave the hospital. I've been told that the expanders feel ridiculously unnatural, uncomfortable when laying down and my breasts will feel (and look) rock solid. However, the perk (killin it with the boob puns) of expanders is that I don’t have to decide on my size up front. With each fill I get the opportunity to test drive the size and see if I want to keep going. After I’ve reached my desired size (TBD!) I have to wait 3 months to ensure the skin over my breasts has stretched enough before my second surgery to have the final implants put in. So, not an ordinary boob job; it's much more complicated

That's a lot of information for today so I'll leave it at that! 
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35 comments:

  1. You are absolutely inspirational. I don't know how you have handled everything you have so well with such a positive attitude! I'm sure that you have had your dark moments, as many would, but your ability to continue to see the blessings in life is amazing. Through the terrifying incident with Caroline (which I know those words don't even justify what happened, I just have a hard time putting it in words), to the car accident, to the devastating news of Thomas' vision, and now this. You handle life with such grace. I'm just in awe of you. Just know that I will be praying for you and your family. Every single moment I get.

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  2. I just wanted to say what an amazing inspiration you are. I have been following your blog since you were pregnant with Caroline. I am in total awe of you and your family. I will be thinking and praying for you in the coming months.

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  3. Wow you are seriously the most brave mama I know!! You truly are an inspiration, so positive through this all. This must have been such a difficult decision to make but your babies and Matt are so incredibly lucky to have you. I'm sure those drains will not be pleasant but it sounds like you are in very capable hands and have a guardian angel looking out for you. Hugs!!

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  4. Wow! You have had quite the last few months! Praying for you on this next journey! It sounds like you've got an awesome team around you!

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  5. You are so brave!!! It is very interesting hearing what all went into your decision and the options you have for the surgery - I never knew how much went into all of this! Praying for you, friend!

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  6. I can only hope to be as strong and brave a mama as you are, Christina! I am keeping you and yours (all of them!) in my prayers. You are such an inspiration and blessing to others. Thank you for sharing your journey!

    Natalie

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  7. Oh my goodness, you and your family have such a remarkable story unfolding. Thoughts and prayers with you as you go through this, but I know there will be so much relief on the other end. And you are amazing for sharing it all!! Xo

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  8. You are amazing! I just cry every time I see you rising above such hurdles in your life. You are such a strong and brave woman and have so many people praying for you!

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  9. Continue to pray for you, the family and your medical team. It is obvious this was a decision that was not taken lightly and all options were thoroughly explored. I wish you the best and God's blessings.

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  10. You are amazing!!! Your openness and honesty about this entire process has no doubt touched and will continue to impact so many women. Praying for you, your doctors and your family!

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  11. You are so strong and brave. My prayers are with you and your family! Hoping you and Thomas both have a speedy recovery!

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  12. You are simply amazing. Your words about your sudden attachment reminded me of something-- the dear friend of one of my closest friends carries the BRCA gene and elected to have the same procedure. Before the surgery, she threw herself a party-- "Bye Bye Boobies - Tata to the TaTas!" and celebrated with the women in her life as one last hurrah for Her Girls :) Your spirit and honesty are just such an inspiration-- continued prayers for you and your family through the coming weeks ahead.

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  13. Oh my goodness. I missed yesterdays post, just went back and read it. All I've got to say is you are the one of the strongest toughest ladies I have ever heard of. Praying for you and your sweet family.

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  14. I don't know how I missed your previous post, but I did. Wow, what a brave [and in my opinion SUPER smart] decision, lady! I am so glad you have the best surgeons and am glad you are so well informed. <3 and prayers to you!

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  15. Christina I want you to know I'm praying for you, Matt, Caroline and Thomas and his eyes too. I felt real sadness when I read your previous post and saw a picture of your Mum Caroline. She was so beautiful and you could tell (from her eyes!) she has a beautiful soul. I'm so sorry for your loss of your Mum and I hope this procedure will put your minds at rest that you will be around for everything with your babies. Praying everything goes well and for wisdom for your amazing doctors. Much love from the UK. Lizzie xo

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  16. Christina, you have been through SO much. WOW!! You are one strong lady! Praying for you and your ENTIRE family. Hoping everything will go smoothly.

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  17. Wow. Y'all are going through so much. I can see how you would be totally overwhelmed. I'm praying for you and your family.

    Jennifer

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  18. The strength that you and your family have is absolutely incredible. You guys are fighters and it's so inspiring. I know you've done a ton of research, but a girlfriend of mine had breast cancer and a double mastectomy and she recommended a website called "Bright Pink". She said it was very helpful to her, so I thought I would pass it along!

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  19. I totally forgot my mom had that same drainage too! (It's not as bad as you think!) The things you remember and dont remember from age 9 are crazy! Best of luck to you! I will be praying everything goes smoothly, that you have a quick and painless recovery and that I don't have to sob over your blog anymore!! (besides happy tears of course!)

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  20. Such a positive and informative post - you are a real inspiration my friend. And you have incredible support at home and on your blog. You are always in my thoughts and prayers x

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  21. Still so proud of you and happy for your peace. Again though, as a nurse, I can tell you the drains aren' that big of a deal. Yes, they will be annoying hanging from you especially with your littles, but emptying and measuring are easy. You and Matt will be nurses in no time ;)

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  22. So proud of you! I also carry this gene and am 32. My grandmother died of breast cancer at 60 and I have also already battled Ovarian cancer and lost my ovaries at 23. Prayers to you and I would love to talk to you more about this journey when you are able and have time!

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  23. I already thought you were brave and inspirational, but after this post, I even more inspired by your bravery. Praying for you and your entire family that the surgeries go as planned. xx

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  24. My family--"gratefully" does not cover it--has never been touched by cancer (though my partner's entire family has had cancer at some point--except for him). Even so, I'm touch by your ability to be so candid about your experience and what you will experience. I think that a lot of people are so reluctant to share the details of their medical tribulations--for many reasons--but it's needed! The openness will surely make another's experience with this much less scary, and I can't even imagine how scary it must be.

    I truly regret that when I've read about this procedure in the past (the first time I'd ever heard of it was that article written by Angelina Jolie a few years back) and thought that it sounded extreme and alarmist. I was ignorant. The way you've explained it, it now makes sense to me--the tragedies your family has been through with breast cancer in the past--now I think, "If you're able, why wouldn't you?" This is such an important step (leap, really!) you're taking not only for yourself, but for your husband and children, so they don't have to go through what you did as a child. That's admirable.

    And you've done something great for the stigma that terribly ignorant, naive people like myself may have unfairly, horribly attached to innocent woman going through one of the most difficult times of their life.

    You are a hero for your family and for others facing this decision.

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  25. Goodness, so many decisions and terrifying at the same time. Wishing you peace and comfort during this journey and strength and hugs to your family and support system. God's blessing on you. I think I need a nap from reading what you are going through. Whew!

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  26. You are so very strong-- after reading all of this I feel bad about complaining about my kids yesterday and how they were acting up!! Stay brave and strong!!!

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  27. Wow. So many decisions, but you are so strong and seem to have this completely under control! You are an inspiration x

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  28. I have been reading your blog (silently!) for a little over a year, and I just want to say that I think you are amazing and brave for making this decision! Thanks for being so honest and open. I am praying for y'all!

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  29. Thank you. Thank you. Thank you for being open and honest...and so detailed! Ha! I totally stumbled on this page by accident through Pinterest looking for your pumpkin dip recipe I pinned long ago. I had to take a double take when I read the title. I tried to figure out how in the world I got to this blog about this subject?!? I really needed to read this! I am doing this exact surgery this summer, but my very first doctor appointment to meet the surgeon is Monday...and I'm a bit nervous! It's comforting to know that I'm not alone and not crazy for doing this without actually having cancer. But I do know it's the right decision. So just know that you are not alone either!! I'll be praying for you over the next few months and will always remember this little divine moment of encouragement for myself as I follow in your footsteps. God Bless You!

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  30. Thank you for sharing all of these details! That is a lot to take in as I'm sure it is for you. I'm glad you have such a good support system in Matt to help you. I will be following along and sending prayers your way!

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  31. You, my friend, are my hero. You have definitely opened my eyes and with my family history, I'm going to check it out. God is really testing your family and that only means he has MAJOR plans for yall so just always try and remember that. Thinking of you! Sending love! Xo

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  32. I just can't imagine having to make all of these decisions. I'm in awe of you. I know it will be hard but I have to believe the peace of mind you'll get in exchange will make it all worth. Sending lots of good thoughts & prayers for you, your family & your Doctor's & nurses. I'll be thinking about you tomorrow.

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