Mastectomy (DIEP) Tips

Tips for Mastectomies

The following was written by AJ, the middle daughter:

Three years ago, when I had my 21-month-old at my house full time along with 2 school aged stepkids part time, I had my preventative double mastectomy.  Preventative because I’ve never had breast cancer.  I had known about my BRCA positive status for about 5 years at that point, so I had done my research into what different reconstruction options were.  I could go for paragraphs about why I chose to get my surgery when I did and why I chose the reconstruction that I did, but I won’t.  Maybe another day.  But, for now, all you need to know is that I chose what’s called a DIEP flap.

A DIEP flap is very invasive with a long recovery time.  Altogether, the surgery takes about 8-12 hours.  After the mastectomy is performed, the plastic surgeon does a triangle-shaped incision on your abdomen.  Then she or he takes tissue out of that area and uses it to create fake breasts in the area your breast tissue used to be.  Some of the skin from your abdomen may be used on your new “breasts,” as well.  Then, your skin is pulled down to cover your abdomen

When you wake up, you’re hunched over and will be until your skin stretches and you can stand up again. Also, you’re unable to lift your arms up.  You’re in the hospital 3-4 day on average.  Then, in a sitting position for a couple weeks with short walking trips on a walker.   You slowly regain strength, range of motion, and height until you’re approved to drive, move more, and eventually return to a more normal life.  Most people I know who’ve had this couldn’t return to work for about 10 weeks, although that can vary based on your occupation, of course.

As you can imagine, there is a lot to do to prep for this surgery.  Today, I will let you know some things that you can buy to make DIEP flap recovery easier as well as give you general tips.  Most of this list will be good for any mastectomy, though, and I recommend anyone, man or woman, who will be getting one to look over this list and consider purchasing these things for your recovery.

Supplies for Drains:

When you first return wake-up, you will have drains.  They’re used to keep your swelling and fluid build-up under control.  They’re annoying, but not painful.  Even removing them feels funny but doesn’t hurt.  Twice a day or so, you’ll have to measure the fluid in them and write it down on a chart.  This is usually done by the nurse when you’re at the hospital and by your caregiver at home, but you can do it yourself if needed.  Some things that make life with drains easier:

• Drain aprons-These are used to carry your drains.  They can be found on Amazon, Etsy, or sewn at home.  If you want to go real cheap, Home Depot sells a cloth tool belt for under one dollar.  Drains can also be pinned to your clothes, which I found easier, but the tag that I used for pinning eventually wore out, so the apron was great when I couldn’t pin them anymore.
• Drain robe-Some people swear by these, but they’re pretty expensive.  I never got one, but you can look for them on Amazon or Etsy if you’d like more coverage and convenience.
• Medical gloves-Keeps everything sanitary.
• Alcohol wipes-When you measure the fluid, you’ll need to pull all the fluid in the hose down to the bulb.  Alcohol wipes are great because they’re sanitary while also acting as a lubricant to make everything easier.

Clothing supplies:

• Button down short-sleeved pajamas-Because you can’t lift your arms over your head, you’ll need shirts that can be pulled on you from below and wrapped around.  I lived in my PJs for weeks, only putting on “real clothes” when I had to go somewhere (like follow-up appointments).
• Stretchy/elastic pants-Many women like yoga pants, but I preferred scrub pants.  They’re super cheap and it’s really easy to find petite ones (I’m short).  I just had the elastic part go across above my incision on my waist.  Remember, the abdomen incision goes hip to hip.
• Button down short sleeve shirts-Again, for when you go out.
• Zipper bras-These can be found on Amazon as well.
• Panties-There’s a healthy debate on this.  Some ladies prefer high-wasted panties that go over the incision.  Some prefer ones that go under it.  There are maternity panties that are perfect for this.
• Robe-I got a cheap, thin robe for general coverage purposes.  I’d put in on and hide my drains under it since, let’s face it, they’re pretty gross.
• Camis with shelf “bras”-I found that after I was healed, bras drove me bonkers for awhile.  Camis were my friend.
• Slippers/Flip flops-You do not want to fall while recovering for obvious reasons and having a non-slip something on your feet helps with that.  I had a hard time taking socks on and off, so slippers were all I wore around the house and I’d slip on flip-flops when I had to leave.

Bedroom supplies:

•  Recliner/Wedge pillow-You will need to sit and sleep at a higher angle once you’re home.  A recliner is a great way to do this.  Do yourself a favor and get one that uses a button to lower and raise.  I didn’t and I ended up regretting it.  My poor caregiver, my husband, had to deal with being the one to free me from it for weeks.  Other women get a wedge pillow and use it on their bed instead of a recliner, so that may be a better choice for you.

A side note-One thing I did that was great was we took the bed out of our room and just had the box spring and mattress on the floor.  It ended up being a great thing since, when I was ready to return to the bed, I had to lower myself to it rather than try to lift myself up on it.  Like I said before, I’m short, so this was a concern of mine.

•  Reading pillow-Similar to a wedge pillow, I used this when I became strong enough to sit up in bed.
•  TV tray/Rolling computer desk-Right next to your new home, the recliner or bed, you’ll want everything you need to be in arm’s reach.  I had a TV tray that held many things I’ll cover in the next several points and I also had my laptop on a rolling desk, which was great for watching movies/TV shows when I couldn’t do much else.
•  Snacks-I’ll talk more about food in a little while, but you’ll want to have some low-effort foods for when you start eating again, but don’t want a full belly.
•  Pill box-I ended up not using mine, but lots of people love theirs.  For me, my doctor had me on multiple non-narcotic pain killers, and each had its own schedule along with the antibiotic and other meds, so it was hard to group them correctly using a pill box.

A side note-I made a spreadsheet before the surgery listing all the meds I was going to take.  Whenever a caregiver gave me medicine, they’d initial it and then set a timer on their phone for the next dose.  If the person giving me meds changed, they’d tell the next person to set the timer on their phone instead.

• Ear plugs-You’ll need to sleep 16 hours a day when you first get home, so you’ll like find ear plugs helpful.
• Sleep mask-See above
• Binder clips-These are great to clip on the edge of your tray and feed your various cables through.  That way your phone, tablet, computer, etc. chargers aren’t always on the ground.
•  Grip and grab-These are sold at Amazon and many big-box stores.  They’re sticks that you can use to pick things up without bending.  Basically, you’ll want one near you at all times for the first few days you’re home.
•   Colgate Wisps-You won’t be able to brush your teeth thoroughly at first, so these are a great way to get your teeth clean.
•  Lip moisturizer-You’ll have dry lips after 8-12 hours on the table, so you’ll want to help them recover.
• Cough drops-Your throat will be irritated, too.  You do NOT want to cough if you can avoid it.
• Lotion-Again, surgery dries you out, so lotion helps.
• Back scratcher-This is so helpful when you get itching in an area you can’t reach.
• Hand sanitizer/wipes-You do not want to catch something while recovering, so have things around to keep yourself as clean as possible.
•  Pillows/Pillowcases-You’ll want lots and lots of pillows around you to hold your arms and legs up at the right angles.  With that, you’ll want even more pillowcases to trade them off as they get dirty.  I went with a bunch of white pillowcases so I could bleach them.
•   Neckpillow-This was a Godsend when I was sleeping sitting up.

Bathroom supplies:

• Shower chair/lawn chair-When you first get home, someone else will be showering you.  Then, as you are more able, you’ll shower yourself, but it’ll be exhausting.  Sitting while doing it makes everything easier.  If you want to save money, you may find getting a lawn chair cheaper.

A side note-Sometimes it can be hard to wash and dry someone else’s hair.  If you go to a hair place, they’ll wash your hair for as little as $5.  This is heavenly.  I highly recommend it.

• Lanyard-For clipping your drains to while showering.  I didn’t end up using mine since I just threw my drains on my lap.
• Dry shampoo-I didn’t use mine, but it’s great for if you need to skip a hair washing.
• Spray conditioner-This is wonderful if you get tangles so that you don’t end up yelling at your caregiver.
• Gauze/Surgical tape-Have some around for after you’re home.
•  Antibiotic ointment-Hopefully you won’t need it, but it’s good to have around in case you do.
•  Maxipads-Oddly enough, this is for two reasons.  Here’s something crazy----surgery can cause you to start your period.  Pads are the easiest way to deal with it if this happens to you.  Also, they’re great to have around in case you need wrappings.  For example, a friend of mine popped a couple stitches after her DIEP flap.  She taped a pad there.  It’s sanitary and soaks up more fluids than gauze alone.  Call your surgeon if this happens to you, but pads are great to have for before you can see her or him.
• Scar tape/cream-Talk to your doctor about what they recommend, but if you want to minimize your scar, there are products out there to do this.
• Hair ties/Headbands-If you want hair out of your face, you should get things to help with this.

A side note-If you can and need to, train your caregiver on how to use these before the surgery.

•  Milk of Magnesia/Stool softener/Probiotics-Surgery can slow down the digestive process, so you’ll want things to help that out.  That’s all I’ll say to that.
•  Wipes-You can use the bathroom on your own, but wipes make it easier.
•  Toilet seat-If you find yourself having to squat to get down to your toilet seat, you may want to consider getting a toilet seat that’s made to make that distance less.  If you’re short, like me, you may not need it after a day or two.

In the kitchen:

• Flexi-straws-It’ll be the easiest way to drink for a long time.
• Disposable plates/bowls/cups/eating utensils-Easier to carry and clean.
• Smaller milks/drinks-You won’t be able to lift a gallon or even liter of fluid for awhile, so having these things in smaller containers makes things easier.
• Protein-rich foods-When you first get home, your doctor is going to tell you to eat lots of lots of protein as it helps with the healing process.  What I ended up doing was drinking protein shakes, eating Greek yogurt, and making sure my dinner included a serving of meat.

   General purchase items:

•  Mastectomy pillow-This can be found on Amazon and Etsy.  It was probably my best purchase.  When you’re going home from the hospital, you will not want the seatbelt going across your chest and abdomen, so this helps keep you safe.  Also, since I had a little one at home, I would sit on the floor, put the pillow around me, tuck my drains under it so he can’t touch them, and he could then lean against me or play with me without much worry.  If you want to save money, you can use a regular pillow instead.
•  Seat belt pillow-This can also be found on Amazon and Etsy.  It wraps around your seat belt to keep it from digging into your chest if you happen to be in an accident.  I graduated to this from my mastectomy pillow as I healed.

No surgery is easy and all take time to heal from, so it’s always nice to have some ideas of what to expect and how to make it easier.  Hopefully I have provided some help for your journey so that it’s less overwhelming and stressful.  If you’ve gone through a mastectomy, let me know if I missed something.