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Your Mastectomy & What to Expect

Your Mastectomy & What to Expect

Your mastectomy and what to expect – if you’re wondering, this post is for you.

When you are facing a mastectomy, there are so many unknowns and you have so many questions. Before my bilateral, I was afraid, no I was petrified. Who wouldn’t be, right?

How in the world do you prepare for something like a mastectomy anyway?

You can’t really, but you can read about the experiences of others. Your experience will be yours alone, but it’s always nice to learn what helps others make it to the other side of surgery.

So, let’s cover some things about your mastectomy and what to expect.

Your Mastectomy & What to Expect

As your surgery day approaches, what can you expect? What should you take to the hospital? How much pain will you have? What will the drains be like? What happens when you get home? What will your chest look like? When will you feel like yourself again?

So many questions!

I put together some last-minute pointers. I hope they help! Keep in mind, my experience was a bilateral mastectomy with immediate placement of tissue expanders which were swapped out with implants later. And it was over a decade ago now, so some things might’ve changed. But much likely has not.

Remember, your situation might be different, but hopefully reading about my experience will help you deal with yours.

Update: Since this post was originally published, my saga continued. After ten years with implants, I experienced a breast implant rupture. Subsequently, I decided to explant both implants and chose the DIEP flap route.

What should you take to the hospital?

This, of course, depends on how long your stay will be. My stay was two nights. I’m hearing this has been shortened for some. The length of stay will vary depending on what you’re having done. By that I mean if you’re having breast reconstruction procedures done at the same time, and if so, what type. 

If you’re like me, you’re an over-packer. I overpack for everything and I overpacked for my bilateral surgery, too. Besides what I actually needed, I packed makeup, eyelash curler, lipstick (which I rarely wear anyway), magazines, not one but two books, my robe, slippers, flip flops and even my curling iron.

What was I thinking?

Things you actually need are: toothbrush, toothpaste (if you forget, they provide these), hairbrush, makeup (you don’t need much ‘cuz you won’t feel like applying it. Trust me. You won’t), a hand-held mirror, your cell phone, charger, any electronic devices you can’t live without, something to read or do such as crosswords, comfy and easy-to-put-on clothes for going home in, slippers, chap stick and that’s about it.

Some women bring their own button-front pajamas because we all know what those hospital gowns are like. There are handy, practical specialty garments available, too, now such as The Recovery Brobe, the Heal In Comfort® shirt, and Get Janes Wellness Gowns.

Some women bring their own pillow and blanket. If doing so, comforts you and/or helps you rest, by all means bring ‘em. A pillow to put between you and the seatbelt is pretty necessary for the ride home. There are various specialty pillows available offering post-mastectomy comfort for this and other uses as well, if you’re interested in those options. An ordinary small pillow worked fine for me.

At the hospital, your medical team will bend over backwards to make you as comfortable and as much at ease as possible. While being prepped, and waiting in the pre-op room, be sure to ask any remaining questions you have. It’s never too late!

Generally, your partner or other significant person will be allowed to stay with you until you’re wheeled off to surgery. Keep in mind this is a traumatic, emotional experience for him/her, too.

What will the pain be like?

Your pain threshold is likely different from anyone else’s, so it’s hard to say. However, there will likely be some pain. Think about what you are going through. How could there not be some pain? But the degree of pain varies for everyone.

I was attached to a morphine drip machine for the first 12+ hours or so. This allowed me to push a button and get an extra boost of pain relief on top of whatever pills I was taking. I had a fair amount of pain even after I got home, and my pain threshold is pretty high.

Don’t try to grin and bear it. Stay ahead of the pain and take your prescribed meds. It’s super important to drink plenty of fluids when you get the okay to do so. This will help prevent constipation. (You don’t want that!)

In addition to pain, when you come out of surgery, you may experience nausea as well. Or you might not. (I did).

Communicate your discomfort(s) with your medical team. There is no need to be stoic, and no one can read your mind. Don’t suffer in silence. For me, the second night was more uncomfortable than the first as I was no longer hooked up to that drip. I mistakenly opted for one pain pill at bedtime. Not smart.

The dreaded drains

You will have drains (Jackson-Pratt Drains, also known as JP Drains). The number of drains you have will be determined by your particular surgery. Their purpose is to prevent fluid buildup, blood clots and infection. Each grenade-shaped drain is attached to the end of a plastic tube. The other end has been inserted into your body, usually one under each armpit and two others, one on each side, usually in the rib-cage area or wherever you incision sites were; this is with a bilateral mastectomy. If you’re having a unilateral mastectomy, you’ll likely have two drains.

Generally, the drains stay in for 10 days or so, but of course, this can vary as well. They are more of a nuisance than anything because they just hang there and are in the way. Be careful not to get them snagged or caught on something. As I mentioned earlier, there are garments with pockets to hold the drains. Many women use lanyards and safety pins to pin them into clothing which works fine, too.

Someone at home can hopefully help you with emptying the drains. If you need to, you can do it yourself. This must be done on a regular basis as instructed by your discharge nurse.

Follow all instructions carefully.

Generally, the amount of fluid is closely tracked and recorded. You’ll take the record to your follow-up appointment. At first, the fluid will be quite red. As you heal, the color becomes more clear.

The day the drains come out, you will be very happy! And yes, the tug when they’re pulled out hurts, but it’s so worth the brief moments of discomfort to be done with the darn things. Plus, you’ll probably get to take a shower! Yay!

As someone who’s had to deal with drain management not once but twice, the Prody™ Drainage Bulb Holder II is what I used, and this worked out great.

Back home

Rest when you can. Eat healthy. Start moving (as instructed). Sounds familiar, right? Walking is generally encouraged, but again, be sure to follow YOUR doctor’s instructions. Your situation is unique. And don’t be afraid to call your doctor with questions. You are not bothering her/him. You might be at home, but you are still under your doctor’s care.

This is when reality can set in, so be prepared for your emotions to fluctuate.

Remember that journaling tip I gave you? This is the perfect time to get started.

What will my chest look like?

I didn’t really take a good look at myself until I got home, and as I mentioned earlier, I was somewhat surprised things didn’t look worse. I had imagined a gruesome sight, but things didn’t look as bad as I had imagined they would. Thankfully.

I was also surprised by the limited bandaging that was used. It seemed pretty minimal, to me anyway. Not sure what I was expecting though.

When the bandages were removed at my follow-up appointment about a week later, there was a fair amount of discoloration and bruising. But that was to be expected. I had some swelling, too. It felt like a lot to me, but my plastic surgeon said I actually didn’t have much.

Remember that old saying; it’s all in the eye of the beholder? Yeah, that sums it up pretty well.

When will I feel like my old self again?

This is a tough one. There is no one-size-fits-all answer, of course, so I won’t even try to give you a timetable. Just remember to take things slowly and follow your doctor’s instructions. Driving isn’t allowed until you stop taking pain medications, so that’s something to keep in mind.

If you had tissue expanders placed during your mastectomy, the “filling” process usually starts fairly soon, in my case, about a week after my surgery. Every situation is unique.

Remember to take things one day at a time. I know this sounds trite, but it really is the best advice I can give.

A final thing worth mentioning is that you will likely be pleasantly surprised by your body’s remarkable ability to heal and adapt.

With or without breasts, your body is amazing. YOU are amazing. And you are enough.

Never forget that.

I hope you now have a little better understanding about your mastectomy and what to expect.

If you want to read more articles like this one, click Here.

Stained-glass artwork in my featured photo by Laurie Bieze.

Have you had a mastectomy and if so, what type? What aspect were you most unprepared for?

If you are facing a mastectomy, what else do you want to know?

If you’ve had a mastectomy, what information/advice might you add?

 

This post is a slightly edited excerpt from my eBook, Facing Your Mastectomy & Making Reconstruction Decisions, available for FREE download via my Resource Library.

 

I wrote candidly about my bilateral mastectomy experience in my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person. 

 

No sugarcoating. Guaranteed.

I also wrote about mastectomies, cancer language, cancer worry, survivor guilt, loss, pet grief, COVID-19, DIEP flap surgery, life as an introvert, aging, resiliency, and more in EMERGING. Available at Amazon and most other online booksellers.

How do you even start to emerge from a cancer diagnosis, loss, the pandemic, or any trauma? #cancer #grief #petloss #pandemic #trauma #womenshealth #familyrelationships

Ellen Tannenbaum

Thursday 27th of January 2022

This post says it was last updated in March 2021. However, current experiences are quite different from how things went even 10 years ago, so they it may be time for a more emphatic disclaimer that this is based on your experience X years ago. For example, recent standards of care include performing mastectomies as outpatient, with a stay up to 23 hours if necessary, which can be converted to inpatient should issues arise, and many women go home within hours once pain and nausea are under control. Also there is a new style of drain tubing that is not so painful to remove (the old style was actually slightly larger under the skin surface). I have had 3 breast surgeries requiring drains and none were left in more than 10 days, though some women do need them longer. I never had a morphine drip, and the prescription pain pills were pretty benign and effective.

Ellen Tannenbaum

Monday 20th of June 2022

@Nancy, I belong to a FB group for women who have had or are facing a mastectomy, nation-wide membership, and all the recent surgeries reported have been outpatient. Very few stay beyond the 23 hour window, whether single or double. Granted, almost all of these women are going flat instead of having reconstruction, since that could be a difference, though some have gone home with expanders. Certainly a DIEP flap procedure would require a longer stay.

Nancy

Friday 28th of January 2022

Ellen, Thank you for your comments. I think I made it pretty clear in the post that it's based on my experience and that everyone's experience will be unique to their situation. As far as the 3-day hospital stay, that's still pretty standard around here as far as I can tell for a bilateral mastectomy. I just checked BreastCancer.org's site and that's what it still states there for what to expect. Regarding the morphine drip - again, that was my experience. That might've changed. I can't speak to that. It's great you didn't need that! The time the drains stay in varies a lot, as you mentioned. Thanks again for sharing your perspectives and your experience. Hope you're doing well.

Nicole

Monday 8th of July 2019

I am so grateful I have found your site. I am newly diagnosed (5/30/19) with a Single Mastectomy scheduled for 7/10/19. I have been reading so much and it all feels strange. In some cases too shiny if that makes sense. I needed your dose of down to earth realism. Thank you so much for sharing your experience(s)...Priceless.

Nancy

Wednesday 10th of July 2019

Nicole, Thank you for your feedback. Keeping it real is always one of my goals. My best to you and welcome!

Monica

Tuesday 28th of May 2019

Its not easy. People think it "only" a breast, but it is an amputation! Now, you know its a big thing. My worst surprise, was the Sentinel Node tracking! 4 needles around each breast, it hurt. Not for long, but the couple of seconds was excruciating. My team had 1 doctor at each breast, they each did the shot together, so it went fadst. Then i had to wait for the injection to move, it took 2 hours, almost missed the operation room window of time because it was so slow moving. But it did work, and because they found the Sentinel Node for each, I only had 2 nodes removed. If you are going through a mastectomy, hang in there. You will get through it. Do it any way you can, it doesnt have to be pretty, or fun. Just get through it one minute at a time.

Nancy

Friday 31st of May 2019

Monica, I agree - it is an amputation! Hang in there, that is good advice for anyone going through this stuff. And you're right, sometimes it's minute by minute. Thank you for sharing.

Carlena Smith

Sunday 4th of November 2018

I was just faced w the news I was BRCA1 positive this past week & my dr advised that sooner than later I have a bi-mastectomy. Yes, it scared me but I was also expecting it (had been for several years; since my mom passed from breast cancer back in 88). Now that I'm reading up on the procedure & aftermath, I'm getting nervous. Here I am, days away from being 43, facing this (thankfully w family), & also knowing mom didn't make it to her 42nd birthday. Like it or not, this is necessary & must be done. Planning my life around it, though, will be a mess (of course, when wouldn't it be?). Thank you, Nancy, for your article! You have put it out there what to expect & when. And you constantly say "ASK QUESTIONS". Believe me, I will!

Nancy

Monday 5th of November 2018

Carlena, You are processing a lot right now, so of course, you're scared and nervous. Who wouldn't be? I am sorry your mother was stolen by breast cancer. I'm sorry you are forced to deal with your brca1+ results and now face a bilateral mastectomy. It's a lot to deal with and then some. But you do what you need to to. I wish you all the best. I'm glad my post helped. You might be interested in my ebook too, "Facing Your Mastectomy & Making Reconstruction Decisions". Good luck with everything and thank you for sharing.

Amy Gonzales

Saturday 11th of November 2017

Thank you for this article and others on your site. I am approaching my bilateral mastectomy with pure fear and dread. It helps knowing what to expect.

Nancy

Monday 13th of November 2017

Amy, You're very welcome. Good luck with your upcoming surgery and recovery. Hope all goes as smoothly as possible.