What It’s Really Like To Go Through A Double Mastectomy

If you were like, “Hey, what happened to Holly? She said she had cancer and then disappeared, did she die?”, I’m here to tell you, I lived, bitches. Not only did I live after getting a stage 4 triple negative cancer diagnosis, despite the odds, I was able to get a double mastectomy (which will keep those murder boobs from creating more cancer), and I am now officially cancer-free. I mean, I have to be on immune therapy for a few years/maybe forever, but it’s a small price to pay.

On average, I had a year to live if I didn’t have immune therapy and respond well to treatment. Which would have been next month. So, given my very close brush with death, I keep thinking back to how I found out that I was BRCA2+ in January 2019, from a 23&Me test. That gave me a 90% chance of getting breast cancer. (BTW, that test only checks for 3 out of 1,000 strains of BRCA and is not totally accurate, so if you think you may have it, you need to get the official blood test from your doctor.) I did nothing about it. I mentioned it to my doctor that May, who advised me to get a preventative double mastectomy. The thought was so horrifying (and over the top, I thought, I was only 28!), I just kind of blew it off and decided that was more a problem for Future Holly. Then in September 2019, I rolled over, found a lump, and this sh*tshow began.

It’s funny how I went from terrified to get a mastectomy to absolutely begging/praying for one in such a short amount of time. Normally at this phase of cancer, it’s no longer an option because you can never go off of chemo, and you can’t have major surgery on chemo because your body does not heal. Immune therapy changed that for me, so I was able to get the surgery when most people cannot. Look, I’m not going to lie, it’s a major surgery and amputation and it really f*cking sucked, but if you have a family history of breast cancer or test positive for BRCA, I am telling you right now, just do it. Because not only will you have to do it anyway, you’ll have to do a lot more terrible sh*t AND STILL maybe won’t survive it. That’s simply not worth it.

If you are doing it preventatively or have an early stage cancer that does not need radiation, you actually can get reconstruction done at the same time as your mastectomy. So you walk in with (potential) murder boobs, walk out with fake boobs that look the same (or even better) but won’t try to kill you in the middle of the night like mine did. If you’re getting radiation, you have to have the mastectomy, heal for a couple months, then get radiation, then wait six months, then get reconstruction. It’s because radiation will melt/mess up whatever recon they try to do, so they give you a while to heal from it before they even bother.

 

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My second clean pathology report! They tested my murder boobs’ tissue and found it all to be CANCER FREE! The white part in the first image is the scar tissue from my lumpectomy. 😳 I got my drains out yesterday and I’m doing great. Btw. I asked what they do with the tissue after testing and they keep it all, frozen, in case something else comes up they can retest. So my breasts are sitting in a jar somewhere in a lab. Found this little detail a bit horrifying but at least they can’t kill anyone else. 😂🔪 #fuckcancer #fuckbreastcancer #triplenegativebreastcancer

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I’m having radiation so I could only get temporary reconstruction that will get screwed up but then be replaced. I opted to get my nipples removed, because nipples are still breast tissue and there is no way at this point I’d risk having a tumor come back. The surgery was done by a breast cancer surgeon and a plastic surgeon together—one took everything out, the other put it all back together. It only took a few hours, but I stayed one night in the hospital. I left feeling really tight around my chest and unable to move my arms. I had little implants that were about half the size of my original breasts as a space holder until I get my actual reconstruction. I didn’t have to get expanders (which go under the muscle to make room for implants) because I’m opting for a Deip flap surgery later on, which means I’ll have small implants on top of the muscle and most of the new breasts will actually be stomach fat. So, new boobs, a tummy tuck, and lipo in one, all in the name of cancer. You know, I always wanted abs. I didn’t think I’d get them this way, though.

The other super weird thing was that my chest and armpits around the implants are completely caved in. Your breasts actually go up to your neck and into your armpits, so all of that is now hollow. They’ll fix it with fat from my stomach, but it does look pretty strange in this interim. Since I got my nipples chopped off, my only incisions were two lines where my nipples used to be and they did the entire surgery through those holes. I had little white band-aids on those lines and that is it. I also left with two drains on either side, which fill with blood/liquid (ew) and you have to measure what comes out of them every day until it’s a small amount and you can have them removed.

Serious question: Can I walk around topless now since I don’t have any nipples?

So let’s talk about pain. At first I had absolutely zero pain, but then I tried to sit up, or even worse, stand up. Your breasts actually go completely numb after a mastectomy so I can’t feel anything under/the sides/or where my nipples used to be. I have a small amount of feeling in the center/sternum area. This was a huge relief since I didn’t have to deal with any of that pain. But when I tried to get up, suddenly my rib cage was lit by every fire from the depths of hell. I honestly don’t think I would have noticed had I been actually lit on fire. This is apparently a nerve pain issue, as your nerves start freaking the f*ck out about what happened to them. This pain went on for four days and no amount of drugs seemed to curb it. To be honest, it was a pain I previously wouldn’t have been able to conceptualize, but it was only when I tried to get up.

However, when that pain resolved, suddenly I was very aware of my surgical drains. I mean, it’s barbaric. They look like this:

Lanyard to Hold Surgical Drains During Shower or Bath Use image 0

Etsy PostOpSolutions Lanyard to Hold Surgical Drains

Except this photo fails to show the huge 8-inch piece of tubing that was in either side of my body. I was told I was super lucky, because some people get four drains and I only got two. They’re just sticking right out of your skin. Below my chest ached and had a lot of pressure that I didn’t realize was from the drains until I had them removed. Which, BTW, also hurts, even though they tell you it doesn’t. They legit just yank them out. But, it’s a relief once they’re gone. I had mine for eight days, and opted to wear mine in a cute little fanny pack instead of a lanyard like pictured above.

I spent a week basically bedridden with family helping me out, and then I went home to my apartment. I needed a lot of help because I could only move my arms like a T-rex, although I was able to touch my head and my ass, so thank God, I could like, wipe myself and wash my own hair. Weeks 2-4 are about the same: super f*cking boring and you’re in a moderate amount of aching pain. This is the pain I expected, though. It feels like I’ve been in a really bad car accident, I’m just very sore and tight and achy. It hurts more in the morning and I still can’t sleep on my side, so I sleep like a corpse and I’m really stiff when I get up. I’m mostly bored because I still can’t really use my arms much and I’m not allowed to drive or lift anything until the 6-week mark. But I’ve totally been able to take care of myself since that first week (with friends helping with things like driving to appointments, putting groceries away, getting things from high cabinets, etc).

Overall, it’s not even close to as bad as I pictured. And if I’d done it preventatively I’d be done by now, and wouldn’t have had the rest of the cancer disaster to deal with. The worst is over and it’s only up from here. Getting my boobs done and a tummy tuck just makes me like every other girl in LA, so I’m expecting it to be way easier than everything I’ve already been through. Honestly, chemo was way, way, worse. Being uncomfortable/sore is infinitely better than being sick for five months of your life. Let me tell you, it’s also a huge relief that I don’t have to neurotically check my boobs for tumors anymore. After FIVE of them over the last year, I’m over it.

 

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Can’t seem to find myself so I’m channeling 90’s Winona instead. 🤷🏻‍♀️💁🏻‍♀️

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So, I’m at week 5, and I have a couple more weeks of healing, six weeks of radiation, six months to heal from that, recon surgery, probably a second recon (most people need two when it’s post-radiation), and then I’ll get my nipples drawn back on via 3D tattoos. And by then, this pandemic shit BETTER BE OVER, my hair will grow back in a way that doesn’t look like I’m the coolest boy in 5th grade, and I can forget that I ever had cancer. Besides the immune therapy. But that’s every three weeks and not a big deal.

Also? I asked them what they do with the boobs they took out and apparently they keep them frozen in a lab in case something else comes up and they need to retest. Super. Gross.

TL;DR; It hurts, it sucks, it’s totally bearable, over with quick, if you need it, just do it. 

So, get your preventative mastectomies, check for BRCA, and check your boobs. I assure you, the rest of it sucks much worse if you fail to take action. And not to be overly dark, but here’s a gentle reminder of the alternative:

Although if I die, you guys better make sure I look exactly this chic at my funeral, kthanksbye.

Images: MR.Yanukit / Shutterstock; Giphy (4); Etsy

Things No One Tells You About Being Diagnosed With Breast Cancer

Hi, remember when I wrote an article about finding a lump in my breast? Remember how I was like, “oh they said it was fine, it’s a less than 1% chance of being cancer?” Remember how all the signs pointed to it not being cancer? …Do you see where I’m going with this?

Not to freak you guys out, but I got that cyst drained and it turned out to be f*cking cancer. I’m now a f*cking cancer patient. If you learn anything from this, it’s get weird sh*t on your body checked out immediately. I just found out (today, actually), it’s much worse than expected, and I’ll be starting chemo immediately and then getting a double mastectomy and later radiation. I’m not joking. I’ve already had surgery to get the tumor out (5.5 cm, btw, which is bigger than a tennis ball). So, I’ll live, thank God, which is the most important thing. But I’m about to spend the next year doing basically nothing but having cancer. And I’m only 28. Now that I’m about to go through this sh*tty, draining, miserable process, since breast cancer affects 1 in 8 women, here’s what I wish I knew about actually being diagnosed with breast cancer.

It Takes Ages To Get Results

I found my lump over a month ago at this point, and I just got it finally cut out last week. In that time, it grew from the size of a golf ball to bigger than a tennis ball. And it hurt! I couldn’t sleep, like that’s basically my entire breast. This is why it’s important to go to the doctor the second you find anything abnormal: biopsies take at least a week each to get results in, and you’ll have many biopsies. If you wait, you could be growing cancer the entire time. This is what happened to me. I got into my regular OB-GYN the next morning after finding my lump. She had me go to a breast cancer center for a better ultrasound. It took a week to get that appointment. Then they drained my cyst and sent it to biopsy because it was abnormal. Another week for results. Then I had to get a core biopsy at a cancer surgeon. Almost another week to get in there. Then we waited for those results for a week. Then I had to schedule my surgery, but first I needed blood work, cardiac clearance (I have heart issues too, I’m basically an old, fragile lady), an MRI, and to get dye injected into my tumor for my lymph node biopsy. So go to the doctor right now if you have anything wrong at all, because it takes FOREVER to get some real answers or solutions.

Treatment Takes Forever

Do you like your job? Too bad, because cancer will make you too debilitated to do anything. Breast surgery restricts your arm usage (see below), you can’t do repetitive movements afterwards (hi, drawing and writing and typing for me), and chemo and radiation both make you too sick to drive or function or really do any work. Awesome. So. Be prepared if you get The Diagnosis that you’re going to have to come up with a backup plan for a while while you take a year for treatment. I had no idea that chemo took six months. Or that a double mastectomy and reconstruction is actually 3 surgeries, not just one, like getting implants is. That makes it a roughly three-month process, minimum. My doctor literally told me to clear my schedule for a year. It sucks, but what’s the alternative? “Guess I’ll just die?” Not really the way I wanted to go.

Chemo Makes You Infertile

Hi, did you know this? Because I did NOT. But to be fair, everyone I know who’s had chemo is well past childbearing years, so I guess it never came up. But *fun facts* about women. We’re born with all the eggs we’re ever going to have. So like, if you shoot your body full of poison, it’s also going to mess those eggs up. I literally told my doctor, like if I didn’t already have cancer, these treatments seem like they’d definitely give me cancer. But because of this, I am now about to see a fertility specialist and freeze my eggs before I begin chemo. I don’t even like kids or think I want them, but I’m not ready to make a decision on it yet. The cancer fun just never stops!

You’ll Have Useless T-Rex Arms

THIS is the thing that I found absolutely nowhere on all of the internet. You cannot move your arms well after breast surgery. You can’t raise them above your head. You just have these little useless T-Rex arms that can’t reach anything and hurt to move. For the lumpectomy, it’s two weeks of T-Rex arm on whatever side your tumor was on. For a double mastectomy, it’s both arms for at least a month. Here are all the things I can’t do with only having one sad T-Rex arm: wash my hair easily, put my hair up at all, pluck my eyebrows, put my dishes away, reach my tall cabinets, water my plants, put on a regular T-shirt without buttons, and the list keeps going. You also can only lift a max of five pounds, which is literally nothing. It’s a weird problem I didn’t previously consider.

They Will Tattoo Your Nipples Back On

wait what

When I was first told I had cancer, I hyper-fixated on the nipple issue. I don’t know why. I think just the thought of my nipples being cut off against my will was so invasive, I couldn’t comprehend it. I wasn’t even that concerned about the cancer at first—like, I just wanted to know, what happens if they can’t save my nipples? I guess it was easier to deal with that problem than face the horrible cancer diagnosis. But my surgeon showed me pictures, and it turns out, if you have to have your nipples removed, they can tattoo nipples on that look exactly the same. You can’t even tell. They can even make them out of other tissue from your body. I thought they’d look like horrible painted-on cartoon nipples, but no, you’d never know. So. That doesn’t exactly solve any problems, but at least if you have to have them, know that this is an option. Some people even replace their nipples with awesome tattoos, or don’t bother at all. You do you.

You’ll Need A LOT Of Help

help

I hate admitting defeat. I hate asking for help. I like to do everything myself. But with breast cancer, that is no longer an option. You’ll need rides to almost every appointment, particularly surgery, radiation, and chemo. You’ll even want moral support for biopsies and the subsequent results. You won’t be able to eat, shower, get dressed, or do anything by yourself. So, be nice to your friends because you never know when you’ll have to ask them to help you put on your squashy surgical bra with the nine tiny clasps. I’m super grateful that my friends have stepped up and are amazing, taking me to all my appointments and basically dropping everything in their own lives. Plus, you’ll need drinking buddies to cope in between treatments.

So, if you’re going through this, please know that so many other people are too, including me, and while it sucks, we will get through it. Hopefully this gives you some insight into what you’ll experience so you can be better prepared. Hey, it could always be worse, right?

Images: Ladislav Bona / Unsplash; Giphy (6)