How to Prepare for Mastectomy and Reconstruction

March 12, 2018

Wow, this blog post was a doozy! I thought about breaking it up into several different posts, but honestly, when I was prepping for surgery, I wish that I would have had a list of tips all in one place. So while this post is crazy-long, I hope that it contains everything you or your loved one will need all in one place! You can also click here to find a one-page PDF checklist that you can use and share.

 

A mastectomy isn’t like most of the other common surgeries we’re familiar with. It’s not a boob-job. It’s an amputation, often followed by reconstruction that involves implanting foreign objects in your chest. It’s a life-saving and likely necessary surgery, but it’s a big procedure with a long recovery time. For context, I had a bilateral, nipple-sparing mastectomy with immediate reconstruction with silicone implants under the muscle. For me, the first 2-3 weeks were the hardest, but I had weight and range-of-motion limitations for the first 4-6 weeks.

 

Planning as much as possible ahead of time helped me tremendously. When you’re focused on recovery and dealing with new physical limitations, it’s nice not to worry about logistics or feel frustrated because you can’t access things you need. It helped keep anxiety in check because it gave me something to focus on besides worrying. Also - a lot of people will ask you how they can help you - this list may give you some ideas for tangible things they can do to help or things to buy.

 

Huge thanks go to the many people who contributed to this blog post. This is a combination of my own advice and the advice of dozens of other women who have been through this type of surgery. My intention is for this to be a “living document” - a list that I keep updated if new, helpful products or services for mastectomy patients are released or if I hear of any other helpful tips. If there’s anything I’m missing, please share it in the comments below or send me a message, and I’ll update this post!

 

Finally - a few disclaimers before I get started. I’m not an expert or a doctor. Different surgeries have different recovery times - an over-the-muscle reconstruction often means less recovery time and better range of motion earlier, while a DIEP flap surgery may mean a longer recovery and more physical restrictions to other parts of your body. There are several different kinds of mastectomies and reconstruction surgeries, so please check with your surgeon and other doctors to understand what your physical restrictions will be and what specific guidelines they have for you.

 

General preparation in the weeks before surgery:

  • Cleaning.

    • “Do  a deep clean of your house to make everything as clean and crisp as possible for when you get back home! Amazing to get back to when you get discharged, and also lowers your stress overall!

    • Check with your cancer center’s social worker to see if there are any local programs that provide free cleaning to cancer patients that you can take advantage of either before or after surgery (or both!). Cleaning for a Reason is a good place to start.

    • Part of surgery prep often includes sleeping on clean sheets the night before surgery as well as when you come home from surgery.

  • Food.

    • “It's helpful to have some pre-made food ready. It was easier than trying to cook the first couple of weeks and my husband liked just being able to heat up a meal. Also keep cups, bowls, plates, snacks at counter level. I couldn't reach up to get the things I needed so this made it easier.”

    • “Plastic cups and Bendy straws - sounds silly, but totally necessary. Makes drinking easier to not have to tip a cup back, plus it's lighter.”

    • You won’t be able to carry grocery bags for at least 4-6 weeks, so make arrangements for your spouse, friend, or family member to be in charge of grocery shopping. If available in your area, consider a grocery delivery service like Peapod or Instacart as long as it won’t require you to carry the heavy bags once delivered.

  • Childcare.

    • “You won't be able to carry anything or lift your hands above your shoulders for 2 weeks, so you may need help with the children. You may feel like you can do things towards the end of that 2 weeks but you should not.”

    • You may be in the hospital for 1-4 days post-surgery, depending upon the type of mastectomy/reconstruction you get and how quickly your pain can be managed. You also may want your spouse, significant other, or another caretaker in the hospital with you, so it may be good to make arrangements for your kids to sleepover a friend or family member's house during that time.

    • You may not be able to lift more than 10 pounds for 6 weeks post-surgery, so keep this in mind with planning for help with childcare if your children are young and need to be picked up.

  • Pets.

    • Arrange for a friend or family member to take care of pets, both while you’re in the hospital and possibly for a few weeks post surgery. If you have a dog, you may not be able to bring them for a walk for a little while, since any quick movements or pulling motions may be very painful or even disrupt your healing.

    • As much as I love cuddling with my dogs, I limited how much I touched them during the surgery prep (which often includes cleaning your body with a prescribed disinfectant soap), as well as when I had the drains in. It’s best to keep things as clean and germ-free as possible!

 

Getting your head in the game pre-surgery

Mental preparation was an important part of pre-surgery prep for me. I skimmed the Kindle book "Prepare for Surgery, Heal Faster" and got some ideas for getting into the right mindset before and after. Some of it is a little much for me, but I got some really helpful tips from it, including the affirmations (I share my adjusted versions of them below).

  • Meditation/Mindfulness/Prayer. I listened to Oprah and Deepak Chopra's Perfect Health meditation series in the weeks leading up to surgery, which really helped me a lot. The Headspace app also has some fantastic meditation series. Basically, however you choose to center yourself, pray, or find peace will be an important part of your preparation!

  • Music. I listened to my "Christie Crushes Cancer" playlist to pump me up before surgery. I was listening and dancing to Sia and Beyonce right up until I was wheeled back into the OR. My favorite pre-surgery songs were:

    • Freedom (Beyonce)

    • The Greatest (Sia and Kendrick Lamar)

    • Alive (Sia)

    • Unstoppable (Sia) - my main song

    • Run the World (Beyonce)

  • Affirmations. I gave my anesthesiologist these affirmations to read to me, adapted from the book "Prepare for Surgery, Heal Faster":

    • Before surgery as you're going under:

      • Repeat 5 times - "Following this surgery, you will feel comfortable and will heal very well"

      • "Following this operation, you will feel hungry. You will be thirsty and will pee easily"

      • Any other statements you want

    • As you're coming out from anesthesia:

      • Repeat 5 times - "Your operation has gone very well"

      • Any other statements you want

 

Supplements

I saw a naturopath about a month before surgery to learn what I could do to help prepare my body. Obviously, every person is different and don't start any new supplements or medications without consulting your medical team. Generally, it's better to get your vitamins/minerals/probiotics through food, but sometimes our bodies need an extra boost!

 

Talk to your surgeons and naturopath doctor (if you have one) to create a plan. It's absolutely critical to tell your surgeons all of the supplements/medications you're on because there are important limitations to what you can take in the weeks and days leading up to surgery. For example, you will likely need to stop all NSAIDs 1-2 weeks before surgery, and many other supplements 3 days before surgery.

 

Also, you need to tell your nurses in the hospital if you bring anything from home and check to make sure it's okay (usually they're ok with probiotics, but they will likely want to administer any meds themselves so they can control and track dosage). I had a larger pre and post surgery supplement plan (which I can share sometime if you want), but these are the 3 things that I found most helpful that you can consider discussing with your team:

  • Arnica montana: This is a homeopathic remedy that is said to support wound healing. It also helped me a lot with bruising from my biopsies. I dissolved 3 pellets under the tongue 3x per day the day before my mastectomy, and for 3 days after surgery.

  • Magnesium Citrate and/or Colace (dulcosate sodium): The post-anesthesia/opioid constipation is NO JOKE. Not pooping for a couple days post surgery is normal, but taking Colace and/or Magnesium Citrate every evening will help you get back to normal more quickly. Just remember to drink lots of water too! You can ask for Colace while you're in the hospital, and when you're back home it's available at drug stores.

  • Probiotics: You will likely be on antibiotics in the hospital and while you have drains in, which wipe out the good stuff from your gut and can cause stomach distress. During this time, keep your gut full of good bacteria! Remember you won't be able to ingest anything the morning of surgery, but ask your nurses in the hospital if you can start on probiotics when you're able to start drinking/eating. They may not have them in the hospital so I'd bring your own - Florastor is a good brand that doesn't require refrigeration while you're in the hospital.

 

What to wear post-surgery

I found it really helpful to plan my post-surgery wardrobe ahead of time. My advice to to pick out which shirts, pants, and pajamas will be really easy and comfortable for you to wear, and put them in a place that will be easy for you to access. For example, I made sure all of my post-surgery clothes were on our lower clothing rod and on a shelf that didn’t require me to reach.

  • Post-surgery bras and camisoles. For both mastectomy and reconstruction, you will need bras that provide some compression, are gentle on your skin, and open in the front. Some camisoles will also have pockets for your drains, which is really convenient. Many hospitals will provide you with at least one, so ask ahead of time so you can prepare. However, it’s still good to have a few on hand, as you’ll be likely wearing these for at least a month. Also, Nordstrom has in-store fitting services for women who have had mastectomies, lumpectomies, and reconstructive surgery. Don’t forget that some of these post-surgery bras and camisoles can be reimbursed through insurance. Here are some options:

  • Planning for drains. An unfortunate reality of both mastectomy and reconstruction is that you’re likely to have drains inserted around the affected breasts for at least a week or two post-surgery. You’ll need a way to “store” them so they’re not hanging off of your and pulling at your chest. There are several ways to do this:

    • Some women use a really simple solution of using large safety pins to pin the drains to the shirt they are wearing.

    • Pink Pockets are basically pieces of fabric with adhesive that you can place on the inside of your shirts. You can stick the drain inside the pocket and you won’t be able to tell they’re there.

    • As mentioned above, there are also post surgery camisoles that have pockets for drain storage. AnaOno also has a great robe that comes with a drain management belt.

  • Loose-fitting, button down tops and pajama tops. After surgery, you may not have the range of motion to put on or take off a regular top. I recommend shirts that open in the front with buttons or zippers. I also made sure mine were loose fitting, since the drains added extra bulk

  • Pants and pajama bottoms that are easy to pull up and down. You may not have the upper body strength to pull tighter pants/jeans up and down immediately after surgery, so find some comfortable pants that are easy to maneuver. I also recommend getting a pair or two of silk or satin pajamas - they make it really easy to slide out of bed or off the couch without using your upper body as support

  • Comfy socks with grips on the bottom. I hate hospital socks - they're always 10x too big for me. The hospital may let you wear your own socks if they have non-slip grips on the bottom, like these

 

How to sleep post-surgery

Restrictions and requirements for sleeping will vary depending on the specific type of mastectomy and reconstruction you have, so make sure to talk about this with your surgeon. For example, you may find you need less pillows with an over-the-muscle reconstruction or no reconstruction, while a DIEP Flap reconstruction may prohibit you from lying flat and you may need to sleep in a recliner. In general though, pillows and support while sleeping are the way to go. I basically slept in a pillow fort for several months after surgery. You don't need all of these - find the combination that works for you. Here are some suggestions to consider:

  • U-Shaped Full Body or Pregnancy Pillow. For me, this is the only thing that kept me sleeping on my back because I used to only sleep on my side or stomach. Highly recommend.

  • Wedge Pillow. For the first month, I also used a wedge pillow to keep me a bit more upright. I found it painful to sleep flat on my back for a while. Many find some elevation while sleeping to be more comfortable, help with swelling, and reduce pain.

  • At least 2-3 extra bed pillows for propping and padding. I found that laying in bed required a lot of adjustment and propping in order to get comfortable. You’ll probably need help doing this for a little while. In addition to the pillows I mentioned above, I also had 1-2 pillows under my head, one under my knees, and sometimes additional pillows under my arms. While mastectomy-specific pillows exist, they may not be necessary if you already have extra pillows on hand.

  • Travel pillows. Some people find travel pillows helpful to put around your neck or under the arms to keep from moving during the night.

  • Recliner: If you already have a reclining chair, it may be more comfortable to sleep there rather than in bed. You won't be able to lie down flat for a while after a DIEP Flap reconstruction, so I know some women who have rented recliners for a few months post-surgery.

 

Post-surgery body care

The reality is that if you have a mastectomy and drains, it's going to be harder to take care of your body the way that your used to. How difficult it is depends on the type of surgery you have. For my bilateral mastectomy with immediate under-the-muscle reconstruction, I basically needed all of these. 

  • Jersey headbands & hair elastics. “If you have hair, the whole no showering thing gets pretty icky pretty fast -- I kept my hair tied back in a bun and kept it off my face with a jersey headband.”

  • Dry shampoo. Continuing on the sentiments above about not being able to shower right after surgery, dry shampoo can work wonders! You could also have someone gently wash your hair in the sink if you can find a comfortable position to do so and are able to keep your drains and incisions dry.

  • Shower bench. “This made it possible to get a good sponge bath during the no showering period. I just sat on this in the tub and hubby helped me get as clean as possible this way."

  • Soft washcloths or sponges. “Sensations were very strange for me for a few weeks, so even my shower sponge felt very odd against my skin... The softer, the better.”

  • Bathing wipes. You'll probably have these in the hospital to wipe/freshen your body since you won't be able to shower yet. I also had a few packs at my house for that first week or two while I still had drains and couldn't really shower.​ Bonus: you can microwave them so it's not too cold against your body!

  • Facial cleansing wipes. “I didn't have the range of motion needed to even wash my face for a while, so a package of cleansing wipes helped me get through that.” Here are a few of my favorite brands of facial wipes:

  • Flushable wipes. “For added cleanliness and freshness after you go to the bathroom. Also because my husband had to literally wipe my ass for me, and these made that easier!” Real talk.

  • Alcohol pads or rubbing alcohol + cotton balls. The only thing that will remove the surgical marker and bandage goo from your skin!

  • Teeth care. "Mechanical toothbrush if you don't use one already and mints for the hospital - I enjoyed those post op."

  • Lip balm. "Definitely take your lip balm to the hospital. That was the best thing I did."

  • Cough drops. "I got a lot of relief from cough drops. Your throat may be very sore for several days after surgery."

  • Diffuser and essential oils. While this isn't directly related to body care, it can do wonders for your mood and wellbeing both in the hospital and at home. Diffusing some mild scents in the hospital can cover up that hospital smell and make the room more peaceful.

 

I really hope you find this useful either for yourself or for a loved one. Click here to find a one-page version of the checklist on my Resources page.

 

Please comment or email me if there's anything I'm missing - I will keep this post updated as I hear other tips/advice. 

 

 

 

 

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