Items and Advice to Make Your Mastectomy or DIEP Flap Reconstruction More Comfortable
Before I had my bilateral mastectomy with immediate DIEP flap reconstruction in June 2022 at the age of 39, I did a tremendous amount of research to prepare for the aftermath of these surgeries. The only time I had been put under was when I had my wisdom teeth removed back in college, so I had no idea what to expect from such major surgeries. All of the research I did to understand what I would need to get through the recovery process helped me feel somewhat prepared and a little more in control, although it admittedly did not eliminate the fear and apprehension I felt.
To anyone reading this who is preparing for these same surgeries, I hope this list and advice helps you and I wish you the best recovery possible. Please do not hesitate to reach out to me if you need further advice or have any questions.
Shower Pouch for Drains
This is a must because you’ll need something to put the drains in while you shower. Otherwise, the drains will hang off your body and will pull at your skin (they are held in place with sutures), and it’s a very unpleasant feeling.
If you’re wondering about the number of drains you might have, I can tell you that I had six after my bilateral mastectomy with immediate DIEP flap reconstruction. My plastic surgeon removed two the morning of the day I was released from the hospital, so I went home with four.
I thought this shower bag was convenient since you can put it around your neck and then stick the drains in the pouch while you shower.
First Aid Kit
This first aid kit came in handy when dealing with the drains and surgery tape. My mom and I wore nitrile exam gloves (which I purchased separately) when handling the drains and used the alcohol wipes from this kit to clean off the drains after emptying them because I wanted to keep everything as sterile as possible. I also used the scissors that are included to help cut the surgical tape where it started peeling off. Yet another helpful thing is the kit has more bandages and dressings if you need them.
No Rinse Bathing Wipes
These are good to have on hand in case you aren’t given the okay to shower once you are released from the hospital.
Wedge Pillow
An absolute must if you are having DIEP flap reconstruction! Some people opt to sleep in a recliner while they’re recovering if they have one at home. I don’t have a recliner, but this wedge pillow did the trick to allow me to get in and out of bed more easily. After DIEP flap reconstruction, because of how significantly your stomach is impacted, you will be getting in and out of bed very slowly and cautiously for a while, so having this wedge pillow really helped.
Before I was released from the hospital, one of the nurses taught me a great strategy to help you get up out of bed that won't put as much strain on your core. You basically roll on your side and then slowly get up from there. If you try to rise out of bed the way you normally would, you'll find out right away it's not going to feel good—and frankly, you won't be able to do it. It will take weeks before your core feels okay enough to resume getting out of bed the way you typically would. Take it slow and listen to your body.
Yoga Bolster
I bought this to put under my knees while I was sleeping. I read that it helped to have one in addition to the wedge pillow. I only used the bolster for the first few days after getting home from the hospital, thus I personally don’t think this was as necessary as the wedge pillow was (which is definitely a must).
With DIEP flap reconstruction, you will not be able to sleep on your side (or your stomach) until your plastic surgeon says it’s okay. That was a bit hard for me because I move around a lot when I sleep and like to sleep on my side in particular.
Mastectomy Pillow
Another absolute must. I used this mastectomy pillow every single day once I was released from the hospital. It’s not going to feel good to have your arms touching your sides and your chest will feel very sensitive. This helps keep your arms away from your sides and offers some comfort while you’re recovering. I purchased one of the pillows that includes a pocket, so I could put ice packs in it to help with the swelling, bruising and general discomfort you’ll feel after surgery.
Ice Packs
I put these inside the pocket in the mastectomy pillow since there is going to be a tremendous amount of swelling and bruising post-surgery, and the ice packs will provide some comfort.
Seat Belt Pillow
I bought this to put on the seat belt for when I was coming home from the hospital and if you need to be in the car for follow-up appointments with my breast surgeon, plastic surgeon, and oncologist. Again, your chest will be feeling very sensitive and you don’t want the seat belt right against your chest. While it was nice to have, I didn’t use it nearly as much as the mastectomy pillow, so this is not a must-have item from my perspective.
Hoodie With Drain Pockets
Having clothing items with drain pockets is another absolute must! It makes dealing with the drains much easier than having to pin the drains to whatever clothing you’re wearing (which is the alternative you’re left with if you don’t get clothes with drain pockets or a drain belt that you wear under your clothes). It’s also very important to have tops that zip up or button up because you are not going to be able to raise your arms over your head for a while if you have a mastectomy.
I bought two of these hoodies that are made by a fellow breast cancer survivor.
Drawstring Pants or Shorts
After DIEP flap reconstruction, your stomach is going to have a lot of swelling. You will also not be able to bend over and will be hunched over at first post-surgery. You won’t be able to stand upright because of how much your stomach is impacted. It makes you realize how much you use your core daily to perform certain movements. Once thing I wasn’t prepared for is that I couldn’t even bend down enough to dry my legs after showering once I was released from the hospital. I had to have my mom help me. This is also why I wore slippers or slip-on shoes because I couldn’t bend down to put regular shoes on or tie them. Of course, this will get better with time as you recover.
I did buy some yoga pants, but even those felt terrible when I tried to put them on post-surgery. It took weeks before the swelling in my stomach went down enough that even yoga pants felt okay again. Instead, I would recommend getting very stretchy pants or shorts with a drawstring waistband. I would size up from your normal size to ensure the pants or shorts are loose enough. You will not want anything pressing against the incision that you’ll have going across your stomach (it basically looks like a C-section incision).
I bought these recovery pajamas that have a drawstring waistband and the top very conveniently has drain pockets.
Another thing that I wasn’t prepared for is you will not be able to eat large portions after DIEP flap reconstruction. I remember when I was still in the hospital recovering and I was able to have my first solid food meal after being on a liquid diet at first. I barely ate anything from the meal because my appetite was still working its way back, and yet I felt the worst bloating I’ve ever felt in my life. I won’t lie, it was miserable eating at first. As your stomach heals, you will be able to eat more normal portions again, but be aware that even the smallest of portions at first are going to cause very uncomfortable bloating.
A Few Notes on the Drains
I will admit that the drains are not great to deal with, and it seems many others feel the same from the comments people make online. I was thrilled when I was able to get the drains taken out. It really lifted my spirits during the hardest parts of the recovery.
You have to empty them at least twice a day. I did it in the morning and the afternoon each day around the same time with the help of my mom. You also have to keep track of how much fluid is in each drain before you empty it. When you’re emptying the drain, there’s also a technique you need to use to strip the tube. Sometimes the fluid is thicker—almost like jelly—and you want to ensure nothing gets clogged in there, otherwise the fluid won’t be able to drain properly. Once you empty the fluid into the cup they’ll provide you before you’re released (so you can measure the amount of fluid), you’ll want to squeeze the drain to get all the air out of it first—otherwise the fluid won’t be able to drain properly—and then put the stopper back on. They should show you how to properly empty the drain before you’re released from the hospital. I was given written instructions too, which was helpful in case I forgot any of the details.
Experience With Pain
Before my bilateral mastectomy and DIEP flap reconstruction, one of the biggest concerns was how much pain I was going to be in afterwards. Before I say anything more, let's acknowledge one very important thing up front: everyone is different and has a different pain level tolerance. In my experience, I would say I only felt legitimate pain two times. Both were when I was still in the hospital. The day after my surgery they had to lay me flat and roll me over to check that the epidural was still in its proper place. Lying flat was excruciating (it will take weeks before you can comfortably lay flat again, hence why the wedge pillow is so helpful). The other time was the morning of the day I was released and they had me try to walk down the hall with a nurse because they needed to make sure I could walk okay before I was released to go home. I had to stop at a certain point because I started feeling terrible pain in my stomach. Aside from those two instances, I would characterize what I felt as extreme discomfort rather than pain, but again everyone’s experience is different.
Final Words
You will notice small milestones as you recover (example, you can finally bend over enough to put on socks by yourself again). Even with the smallest ones, celebrate them because it will help you keep as positive of a mindset as possible. I won’t sugar coat it, recovery from a mastectomy and DIEP flap is not fun or easy. Your body will feel completely mangled and you will hate looking at it when it is so bruised and swollen. There is no way around it—it is incredibly hard seeing your body like this. At the same time, it is amazing how the body heals. It’s challenging to be patient, but be as easy on yourself as you can and let your body take the time it needs to heal. Having the items on this list will help you be as comfortable as possible as you recover!