Your Mastectomy & What to Expect

Your Mastectomy & What to Expect

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…

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?

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

What should you take to the hospital?

If you’re like me, you’re an overpacker. I overpack for everything and I overpacked for my bilateral surgery, too. Besides what I actually needed, I packed my 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 also insist on bringing 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.

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 be pain. This is just a fact. Think about what you are going through. How could there not be pain? But the degree of pain varies for everyone.

Generally, you are attached to a morphine drip machine for the first 12-24 hours or so. This allows you to push a button and get a little extra boost of pain relief on top of whatever pills you might be 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 things 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 about two weeks, 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!

Back home

Rest when you can. Eat healthy. Start moving (when and 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.

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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 only at Nancy’s Point.

 

Facing Your Mastectomy & Making Reconstruction Decisions

12 thoughts on “Your Mastectomy & What to Expect

  1. There are so many things I wish I had known. I had a double or bilateral mastectomy. I had expanders put in to allow for the reconstruction phase. The biggest surprise for me, was I would never have any feeling in the breast area again. No sensations, no feeling, occasional itching which even if you can scratch you don’t get any relief because you can’t feel it! I make reference to a movie Mrs. Doubtfire, the scene where she is cooking at the stove and her breasts catch fire, I laugh but that truly is a fear for me. I had DIEP flap reconstruction, so my breasts look like breasts, they are similar size to what I was before, but again no feeling, except pain, more like aches, random aches deep inside. There is something I had never heard of until this year, I am now 3 years in remission, Post Mastectomy Pain Syndrome. Yes, I have that, not much you can do for it. I have a nice CBD/arnica blend cream that I use twice a day to help with the discomfort. Feeling like myself? No, I feel like I am not whole, not that person anymore. I have a new normal and I take it one day at a time. Getting used to it? I would say I have made peace with it, in the respect that every day is a new day and I take what comes. Keep the parts of you that you can, your sense of humor, love of life and positivity. LOVE YOU, you are still a unique being, it just takes some time to accept the new or changed you. I think for me that was the hardest part, I am still adapting. It’s ok to grieve. It not just about the mastectomy, it is also about the cancer journey that brought you here. Hope this helps someone else.

    1. Marla, Thank you for sharing so candidly. A mastectomy with or without reconstruction is a huge adjustment and it takes time to adapt and accept all the changes. Sometimes I think we beat ourselves up too much regarding a lot of things. It’s definitely okay to grieve. Cancer takes a lot. It’s normal to miss your old self and this doesn’t mean we aren’t grateful as well. I’m sure your comments and advice will help others. Thanks again.

  2. Nancy, this post is an excellent primer on what to expect for a mastectomy. Your advice is spot-on. Those Jackson-Pratt drains are just awful. And the freedom I felt when they were finally removed was terrific.

    I had a bilateral mastectomy with DIEP flap reconstruction, so basically it was a one-stop-shop surgery, where the mastectomy and reconstruction took place during the same surgery. It was a 10-hour microsurgery, where surgeons use belly fat and one’s circulatory system to create new breasts. Overall, I’ve been very satisfied with the results.

    I’d like to add that you might itch like crazy on the surgical spot(s). I don’t know if I was allergic to the medicated cloths kept on my breasts 24/7 or whether it was the healing that was causing the itching (in my case, I think it was both). I itched so badly, I cried. It was intolerable. But I managed to get through it.

    I’d also like to add that the night staff at hospitals can be less than stellar. Mine were atrocious, even in a hospital with an excellent reputation, so it is a good idea to have an advocate available to help you navigate the seas of incompetent and lazy personnel. Speak up when you can.

    In my case, morphine makes me have delusions of grandeur and accelerates my fear. That’s what happened the first night of my stay at the hospital. I regret to say that I threatened to beat up the maintenance man, and I felt like a superhero. The staff soon recognized that the problem and switched my pain killers.

    Great post, Nancy!

    1. Beth, I’m glad you’re satisfied with your reconstruction, overall. I can’t really say the same about mine. It’s okay at best. That itching sounds just awful. Sometimes even now, I experience itching, but nothing like you describe. I had a bad experience with a night nurse, too, so that’s an interesting observation. And how frightening to experience delusions when you were on morphine. Good heavens. Glad the staff figured that out! Thank you for sharing about your experience, Beth.

  3. Ice packs can be your very best friend when the painkillers aren’t quite enough. I wish I had known how unnatural my reconstructed breast would feel right after surgery. It was frightening. Just had to give it time to “soften” up.

    1. Annmarie, I don’t think I used ice packs following my mastectomy, just after my biopsy. No one suggested that as I recall. I wonder if there’s any danger in leaving them on too long when you can’t feel things. My reconstructed breasts still feel unnatural. You didn’t mention what sort of surgery you had, so I am wondering about that. I am glad things softened up for you. Healing definitely takes time. Thank you for sharing.

  4. Have your arm pits waxed before surgery!! I am almost 3 weeks post op, a bilateral with tissue expanders in place!! Having T-Rex arms and not being able to really shave my pits is driving me bonkers, although I will take it compared to the alternative!!
    I am regaining sensations only arms and chest and it’s scary sometimes. I feel a dull ache but again compared to the alternative I can deal!!
    Great article..

    1. Crystal, Great tip. Thank you. Even now, I still struggle with shaving my arm pits. For some reason, ever since my bilateral, I don’t have much growth now there anyway, but when I do attempt shaving, it still makes me very nervous as I have no feeling. Thank you for reading and sharing. Glad you liked my post.

  5. Nancy, thank you for sharing your experience about having a mastectomy and what to expect. I had a lumpectomy but it is always helpful to know about other options in case we ever have to face a new challenge. I am one who is usually scared of the unknown so I will make sure to re-visit this post if I, or someone I know, ever needs to face a mastectomy. xo

  6. Thank you so much sharing this advice, Nancy! It’s the little things that are so easily overlooked (like a pillow to put between you and the seatbelt!) Thanks for sharing your experiences and helping more women go into this surgery prepared.

  7. 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.

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