Caring For Someone After a Double Mastectomy (Top Surgery)
TW: Some pictures featuring blood and incisions
A double mastectomy is when most of the fatty tissues, glandular tissues, and lobules are surgically removed from the chest. There are several variations of this surgery, and it’s performed for different reasons. This article is written to help those who are preparing for, or caring for someone who needs, female-to-male (FTM) or Female to Nonbinary (FTN) reconstructive surgery (top surgery).
- If you are able to, strengthen your core muscles and your arm and shoulder muscles as much as possible before surgery. This will help with a quicker recovery, and you’ll gain your independence faster.
- Avoid alcohol and smoking 1-3 weeks before surgery. You will heal faster.
- Make sure you have transportation arranged to take you to and from the hospital. You will be in no condition to drive, especially if you opt for an outpatient surgery.
- Make sure you have loose, comfortable clothes. I highly recommend shirts that button or zip in the front. (Think plaid or Hawaiian shirts.)
Types of FTM or FTN Top Surgeries:
Keyhole Top Surgery:
Recommended for people with small chests and very tight chest skin. This surgery is not a good fit for most people, as it removes no excess skin. The procedure does limit scarring and retains most nipple sensation, but the nipple is not repositioned on the chest.
Periareolar top surgery:
Recommended for people with smaller chest sizes (A or B cup). Most people keep nipple sensation and have less scarring, but 40-60% of people require revisions if they want a completely flat chest.
Double incision top surgery with nipple grafts:
Recommended for people with larger chests and bodies. Most of the fatty tissue is removed, and the nipples are removed, repositioned, and often resized. This procedure is the most likely to result in significant scarring and loss of nipple sensation.
I helped my spouse after he had the double incision top surgery with nipple grafts, so recovery tips will be geared more toward recovery for that procedure.
If at all possible, stay overnight or get a hotel near the hospital where you have your procedure.
I took my husband home the same day of his surgery, and the ride was rough for him. We were two hours away from home, and stuck in some of the worst stop-and-go traffic I’ve ever experienced. He was still coming out of anesthesia and it was hard for him to understand what was happening. Any use of the car brakes was painful and nauseating for him. Also, make sure you know your local seatbelt laws so you can travel the safest, most comfortable way possible. Those straps across the chest can be a little scary for someone who just had major work done in that area.
Try to have at least one person around at all times for the first few days.
Two people is even better. I realize this isn’t possible for everyone. I was extremely fortunate that I had an amazing boss who let me take all the time off I needed to be with my spouse, and we are both lucky that he has a supportive mother that helped me care for him when I needed to sleep or eat, or sometimes just to step away and breathe. (It might be difficult for you to see your loved one in so much pain, and that’s okay.)
If you can have someone around for that time, make sure you both know what it may entail so you’re both as comfortable as possible. Install a bidet if you can. You may need help going to the bathroom, or cleaning yourself up because it will likely be VERY difficult to use a lot of your arm range, and you cannot lift your hands above your head for the first 2 to 3 weeks. And on that note:
Invest in dry shampoos and body wipes.
Even when you’re not actually very dirty, you’ll probably feel like you are. Wipes will help you feel so much better. I recommend face wipes as well. They just make you feel fresher.
Use a comfortable armchair or body pillows.
You will have to sleep on your back for the first week after surgery. My husband tosses and turns a lot in his sleep, so he opted to sleep in a comfortable recliner chair. But on the flip side of that, don’t be afraid to sleep in your bed as long as you secure yourself, especially after the first week. It took me three weeks to convince my husband that it was okay to sleep in a bed, and that chair was not good for him for such an extended use.
"Humans Need to lie down!" - Alyus when he finally went to bed
Get easy foods to make:
Again, you’re going to have very limited use of your arms. You’re probably going to feel like a t-rex. Get foods you know you like and are easy to prepare on your own if you don’t have someone to stay with you the first few weeks.
Make sure you get a compression binder that fits correctly.
My spouse’s first compression binder was too tight in the armpits and ended up causing him some serious cuts and welts that he wasn’t even aware of at first, because he was still numb in those areas.
Watch for infection.
Watch for infection in the incision areas and the nipples. If you have nipple grafts, there is a chance that your body might reject them. If you see any sign of infection, contact your doctor. Depending on the severity of the infection and at what stage you are in your recovery, it may be treatable at home. Be sure to get a professional opinion.
(Side note: Anyone who doesn’t think my husband is a badass has never seen someone pour peroxide on an infected nipple. It’s brutal.)
Be prepared for surgical drains.
There may be surgical drains in your chest area or armpits. Sometimes they are removed before you leave the hospital, but often they stay inserted for 1-2 weeks after surgery. The drains are used to remove and collect blood, pus, and other fluids that might build up in your chest after surgery. The Jackson-Pratt drain is the most common drain used for top surgery and is the one I have experience with, so here are a few tips for JP drain maintenance.
The JP drain is a plastic tube and a bulb to collect fluids. (My husband referred to the bulbs as his blood grenades.) The bulbs need to be emptied of fluids a few times a day, and the tubes sometimes need to be cleared of obstruction (also known as milking your tubing). Make sure your doctor or nurse shows you and/or your caregiver how to properly do this before you leave the hospital.
This is the technique I found most effective for clearing the tubes of buildup:
Make sure your hands are clean.
Pinch the tubing between your thumb and forefinger, close to where it goes into your skin. Keep this hand in place while you milk your tubing so you’re not tugging on your skin.
With the thumb and forefinger of your other hand, pinch the tubing right below your other fingers. Keeping your fingers pinched, slide them down the tubing, pushing any clots down toward the bulb. You may want to use alcohol wipes or coconut oil to help you slide your fingers down the tubing. (Coconut oil is smoother, but leaves the tubes slick.) You can also use a pencil instead of your forefinger to slide down the tube, but I found using my own hands easier.
Do this as many times as you need. If you cannot remove a clot and there is little to no drainage, call your doctor or nurse as soon as possible.
Also be sure to have your nurse show you and/or your caretaker how to properly remove the bulbs and unplug the stopper for emptying the fluids. Don’t be afraid to look up videos or read articles on this if you forget the steps. (More information here: https://www.mskcc.org/cancer-care/patient-education/caring-your-jackson-pratt-drain)
Take care of yourself emotionally.
It was difficult for my spouse to remain inactive during his healing process. Give yourself permission to just heal. You went through major surgery! Your body is working hard to get you back on your feet. Don’t overstrain it. Play all the video games, read all the books, watch all the T.V. You’re not being lazy! You’re healing!
It’s also normal to be sad or scared. Let yourself feel whatever you are feeling. Write about it. Someone is probably going through what you are, and feels very alone.
If you are a caretaker, make sure you’re letting yourself rest when you can as well, both physically and emotionally.
If you know someone who is going through this surgery and want to help, see if they need any of the supplies mentioned above. Not everyone has the help they need.