Mastectomy Survival Guide

Bye Bye Boobies!

My genetic screening tests indicated that I had a “cancer gene” called the ATM mutation. It meant I had a 3-5 fold higher times risk of getting breast cancer, and a slight risk for pancreatic cancer (a small non-measurable number). So I choose to start with the double-mastectomy. “Doctors, just chop off those cancery boobs!”

Little did I know, there are many types of mastectomies and different reconstruction surgeries also. I’ll summarize the types for you:

Modified Skin-Sparing Radical Mastectomy: The surgeon removes the entire booby including nipple, areola, and leaves most of the skin. This is what I had; it was a double mastectomy. Yes that means…. No nipples! That was a hard realization for me.

“WHY THE NIPPLE TOO? NOOOOOOO! I’ll look so weird, right? What did nipples ever do wrong?”

Well they get cancer too, those little bitches. So they cut the nipple out with a football type circular incision and removed all the breast tissue inside while leaving the muscle underneath. I also had sections of three sentinel lymph nodes (the “main” nodes in your armpit area) removed on the right side for biopsy and thank GOD they were negative for cancer, finally a little good news.

Radical Mastectomy: Same as above except more or ALL lymph nodes and skin are removed, and the chest muscle is also removed.

Simple Mastectomy: Removal of the entire nipple, areola, breast tissue, and most of the skin. The muscle and lymph nodes are untouched.

Nipple-Sparing Mastectomy: They remove all of the breast tissue inside the breast, leaving the nipple, skin, and muscle in tact. This is the surgery most prophylactic mastectomy candidates choose.

Preparing for a mastectomy surgery.

I had no idea what the hell I was doing. I started buying things online that I didn’t need like extra large round bed pillows because someone commented on a blog from 2002 that said they used them. I wanted to be prepared so I just bought anything I thought I might need. Well I ended up needing, like, barely any of it. Pain pills is really all I needed. But nonetheless, there are some things that certainly helped me and I’ll give you my list of essentials.

First of all, this surgery is a bitch. I’m not going to sugar coat it for you because that’s not helpful at all. On a scale of 1 to 10, the pain after surgery is going to be a 12. If you’ve had children, I’ve been told it’s worse than natural childbirth. I stayed in the hospital two nights after surgery, which is normal, because I literally could barely move. You’re going to feel a lot of pain and pressure on your chest, but fear not – morphine to the rescue! You’ll also have drains coming out of the sides of your chest that add to the delightful fun. I had one drain on each side and they are going to make you hate life and it yes it will seem like an eternity that you have them. I had mine for almost three weeks and I felt like I was going to have them the rest of my life. I visited the plastic surgeon twice and each time he said they weren’t ready to be removed because they were still collecting too much fluid. Seriously. Fuck. My. Life.

When you wake up from surgery you’ll be in a mastectomy bra from the hospital. You’ll want to have a few more bras because you’ll be wearing them 24/7. What I did, was buy a few cheap sports bras that had a front or back hook. You’ll need to cut a small hole in the side of each of them, and then thread through a loop of Velcro, or some sort of fabric to tie the drain tubes to the bra. Viola! Honestly there are not many good mastectomy bra options out there. Even the fancy, expensive Stella McCartney mastectomy bra doesn’t work well because it doesn’t have anywhere to tie the drains to it and safety pinning them is a little dangerous.

Here is a list of some things that were life savers:

A neck pillow – Like those ones people wear to sleep on airplanes. You’re not going to be able to sleep laying completely down on your back. You’ll need to angle yourself up and sleeping with one of those neck pillows was actually really comfortable.

Button up shirts and loose pants/pajamas – You’re not going to be able to dress yourself very well, so loose clothing and button front shirts were livesavers.

Dry shampoo (if you have hair!) – Once you’re able to shower, you’ll realize how incredibly exhausting and tedious it is, and you won’t want to do it very often. You probably can’t wash your own hair so you’ll need dry shampoo in the meantime.

A backscratcher stick – Yes I know. It seems like the epitome of laziness but it is seriously a lifesaver. You’re going to feel like you have T-Rex arms because you can’t reach very far with them. Backscratcher stick to the rescue!

A small basket – You’re going to have a lot of medicines you need to tote around with you, having them in a small basket helps keep it all together. You’re also going to want to throw a notepad in there to write down times you take medicine and to keep track of the drain levels.

Netflix, books, ipad, etc. – You’re going to have a lot of free time while you’re recovering. This is the best time to take it easy and binge watch any TV shows you’ve been meaning to watch. I watched every season of Homeland in about 4 days, averaging about 10 episodes a day. It was hard core.

 

** WARNING! If you would like to see photos after the mastectomy please click the link to “Keep reading…”  If you are squeamish and don’t want to see what nipple-less scarred boobs look like then DON’T CLICK the link!! **

 

Keep reading…

A few days after surgery I took the bandages off. Those betchy nipples are gone! Don’t worry, the plastic surgeon will reconstruct them in another surgery down the road! More on that in the future!

You can also see the drainage tube coming out of my side. PS – my tattoo says “namaste” for those who ask. Namaste yoga betches!

I know it looks gross but this is LIFE! You can also see the drainage tube coming out from my side.
I know it looks gross but this is LIFE! You can also see the drainage tube coming out from my side.

Once the tubes were off and the crusty blood was removed:

mastectomy recovery
Flat bagel boobs! :\

This was after my first Saline fill with the reconstructive surgeon. I got a few fills after this to expand the skin back out to be able to fit in the final silicone boobies. YASSS!

This was after my first Saline "fill" to the tissue expanders.
This was after my first Saline “fill” to the tissue expanders.

One thought on “Mastectomy Survival Guide”

  1. Thank you for your ideas, advices, & laughter through this time. I tried 2 times over the last year to have recon surgery only to end up with a complete double mastectomy. I am in a very dark corner right now that I know I will come out on top because of my faith, friends & family. Buttttt, it’s only been 3 days today so not going to beat myself up too much.
    Thanks again 💖

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