Top Surgery Tips & Tricks

A while back, I had top surgery - a full double mastectomy to remove my breasts entirely. I'm collecting here all the tips & tricks I found out or learned later, in hopes that it'll help others. Don't try to read it all at once; it's too much. Pick a section and make plans from it, then come back for the rest later. I don't include any information on nipple graft care; I chose to go no-nips, so I have no first-hand knowledge there.

Doing Research

• Figure out where you will have the surgery. If you are already seeing a doctor for HRT, they will be able to guide you. You want to make sure your insurance sees them as in-network.
• Look at many many pictures of top surgery results. Even better if you can find pictures of surgeries done by the surgeon you plan to go to.
• Think about what kind of surgery you'll want. Do you want a more athletic/masculine look or flat/androgynous? Nipples or no nipples? Your surgery team will ask you these questions when you start talking to them, so go ahead and make these decisions. 
• Look for a Facebook group or other support-type group of other people who have had or are going to have top surgery. I found one specifically for patients of my hospital group. Having some peers to bounce ideas off of is helpful.
• I suggest a clipboard or folder where you start keeping your important top surgery notes together. Make lists of details you want to remember, questions you want to ask, a shopping list of things to get, concerns you have.

What to Expect In the Beginning

• Once you meet your surgery team, let them guide you. They'll walk you through the process. They've done this many times before and know what to do next. If they don't seem concerned about something, you shouldn't be either. 
• Keep a list of questions you have, so you're ready when you have a chance to ask them.
• And it is a process. There are many hoops to jump through, just to check off the paperwork, and that means several appointment, some of which may be virtual. It has to be done; be patient and take your time.

Insurance & Billing

• This is going to be the longest and most frustrating part of the whole thing. Set aside time to look at the money end of things when you have the spoons to do so.
• You can ask your insurance about the surgery before even talking to the surgery team. Send them a message (they probably have a client portal, and you'll want to go ahead and get familiar with it). Ask what your policy covers in relation to "gender-affirming care". They will probably have a form response they'll send back to you.
• Insurance pre-approval will happen on its own timeline. Don't be in any rush, it may be several weeks.
• They will require a WPATH letter. Your surgery team will probably have an associated psych department to send you to, who will already know what to write. Everyone involved already wants you to get the surgery; you don't have to convince them. This step is just checking the box for insurance, not a test of your intent.
• Insurance may request an additional WPATH letter. There are many care providers - many of them trans themselves - that will meet with you online and write you a letter; it may cost $100-200 to complete this step.
• Get a prepayment estimate, but unless there's a discount for prepaying, try to wait until after the bills come in and you've collected them all.
• Sometimes you'll get a bill that is still pending insurance. Let them keep pushing for insurance to pay it. It's easier to pay later than to get a refund. But don't push it off so hard they start talking about Collections.
• There will be multiple bills & claims, and they won't match exactly. Wait for at least three months after surgery to start matching up insurance claims & Explanations of Benefits with hospital bills. 
• If insurance won't pay something that it seems they should, ask your insurance provider if it would be paid with a different medical code. On some things, the hospital can change the medical code to something else and get it approved.

Leading up to Surgery

• If you've been able to find other people about to have the same surgery, see if you can connect with someone having surgery the same day or same week that you can befriend. Having a buddy at the same stage of things can be reassuring, or even fun!
• Schedule as much time off for work as you can get away with. My surgery team suggested I take off at least three weeks, but on the paperwork they returned to HR, noted down six weeks. It's easier to plan a long time and come back early than to take off extra time if you need more.
• Work with HR, and do all the paperwork. HR will need a letter from your surgery team, but you'll also want to look at whatever vacation/sick time structure you have available. And then you'll need to do paperwork for short-term-disability if you have it, and also do the FMLA paperwork (Family and Medical Leave Act). That protects your job when you come back. Probably won't be necessary, but cover your bases.

Prepare for Recovery

• Acquire several men's button-up short-sleeve shirts that are too big, preferably old and soft. Goodwill options are perfect here.
• Get some soft plain undershirt tee-shirts that you don't mind cutting up.
• Prepare your house. Go around your house and make sure everything you need is below your shoulders. You won't be able to lift anything heavy or reach for anything. So everything goes on the counter.
• move comfy clothes to bottom rail in your closet
• move shower supplies within reach
• Plan to eat comfort foods that are easy to fix. You won't feel like fixing anything for the first few days, and you won't be able to reach for things for a few weeks. 
• Set everything you can out on the counter where it's easy-access.
• Make sure spoons/forks and paper towels will be in reach.
• Buy paper plates - doing dishes is too much reaching and lifting.
• Have straws handy for your water cup that should be with you all the time. Longer straws are great so you don't even have to pick up the cup.
• The bottom drawer of the fridge and the back of the fridge will be out of your range, too, so move everything for fixing easy food where it's easy to reach.
• My big challenge was the microwave mounted under the cabinets - I could put food in it, but couldn't reach to get it out.
• If you can pre-plan some meals and partially prepare them ahead of time, it will help. Do all the food cheats that work for you. Oatmeal, cereal, or mashed potatoes that are already measured and in a cup; just add milk or water. Soup in a microwavable cup. Lunchables if making a sandwich is too hard. Single-serving packs of chips so you don't have to deal with the big bag. Think of it like fixing to-go lunches for the next week or so. Take advantage of anything that makes it easy for you.
• Go through all this list and buy all the supplies you'll need. I took over a table at my house for nothing but top-surgery-recovery items.
• A mastectomy pillow was great - I slept with it around me for the first week, and wore it anytime I had to be in the car for several weeks.
• If you are able, get a power-lift recliner to sleep in for the first few weeks. I rented one for a month from Rent-A-Center for like $150. It was worth it to make sleeping on my back easy with a pillow on each side, and I didn't have to use torso muscles to stand up or lay back the first few days. A neck pillow may also be a good idea.
• If you can't rent a recliner, you'll need to plan for how to keep yourself sleeping on your back, and how to get in and out of the bed. Others have suggested a wedge pillow or a pregnancy pillow with multiple regular pillows to make a nest.
• A bidet can be really helpful. Get it set up and get used to using it well before surgery. Wiping yourself may be difficult.
• Schedule people to come visit and sit with you for at least two or three days - a week if you can. Just having someone to manage the remote, get a drink, and keep your spirits up is important. I made shifts for morning, afternoon, evening, and overnight, to make sure I wasn't alone at all for the first three days.
• Assuming you have daily meds you take, the surgery team will tell you which medications to stop when, and when to restart them. Write it down, and follow it.
• If you have one of those grabber tools, find it and have it within reach, too.

Surgery Day

• Take off the day before surgery, too. Use that day to take care of you, and to handle things that will be harder after. Get a massage, a haircut, fill up on groceries, refill prescriptions, make sure the car has gas. Go out to eat and do all the 'out and about' things you enjoy. 
• I shaved my head the day before so I wouldn't have to deal with that for several weeks. You may also want to shave any hair on chest or abdomen, to keep from having tape pull it out.
• Wear pajamas or something super-comfy in to the surgery center. Be as comfortable as you can. Your top will need to be a button-up, not a pull-over.
• There's a lot of killing time and waiting, so have a book or kindle or something. Pick light reading that you don't have to think about and don't need to remember later.
• You'll have a person with you to be a driver. If you're okay having them in the room with you, ask them to be in charge of all your things. Have a notebook for them to write down names of people, instructions you're given, and answers to questions you ask. You probably won't remember anything later (yay drugs).
• When you wake up, you'll have a sore throat from the breathing tube. This is your chance to demand a milkshake or something on the way home. I suggest having apple cider or juice that you can have someone microwave to drink for the next few days.

What to Wear

• You'll be sent home from surgery wearing a surgical recovery binder. These are really nice binders. You'll wish you'd had one of these beforehand. That said, you'll be wearing it like 23 hours a day every day, and it gets old really fast.
• I quickly ran into issues with the binder rubbing, especially under the arms. I took a cloth baby diaper - a washcloth might do the job, too - and folded it over the top of the binder and over the armholes where I needed a little extra padding. That also worked well for clipping the drain bottles to.
• I also took some teeshirts and cut them down the middle, then put them on under the binder. That also meant I wasn't sweating directly onto the binder. Doing it over again, though, I would have cut them off-center so the overlap wasn't where the binder was fastened.
• Over the binder get-up, you'll be wearing those overlarge old soft men's button-ups that I mentioned earlier. Ones with a chest pocket are great for your phone. Embrace your inner old man.
• If you need to go out and bundle up, wear comfy zip-up hoodies or jackets. Everything you wear on top needs to button or zip up, and be as soft as possible to be comforting as well as comfortable.
• I don't think I wore anything but pajama bottoms for the first three or four weeks. Be comfortable.
• Pants with large pockets may give you another place to tuck your drain bottles. Or get some biker shorts with pockets and wear those as underwear.

The First Week - Draining

• The first week is just survival mode. Eat, drink, sleep on whatever schedule your body wants. Take all the drugs they gave you. Watch a lot of TV.
• Drink lots of fluids to help flush out everything. Keep a cup next to you full of water. Get whatever flavor drops you like to give you some variety in taste. I like the Kool-Aid ones myself, and cycle between orange, cherry, and grape.
• The meds will give you some wicked dry-mouth. Keep that cup of water nearby, and some mints or hard candies, too.
• Have a chart or list or something to track what meds you took when and when your next dose is due. The meds will make you stupid; write it down. Set alarms if you need to.
• You may want to take Benadryl if the drain sites itch - don't try to scratch at them; it'll just make it worse.
• If you get constipated because of drugs, add a gentle laxative as needed. Have Gas-X ready, too, if you need it. And drink more water.
• Since you scheduled people to come sit with you... let them help you. Don't try to get up and do things yourself; this is when get to be lazy and let everyone else do things. Healing is a full-time job right now; don't do any more than you have to.
• You're going to be tired. Like really exhausted. Everything will take more energy than it ever did before. Remember your body is using a lot of energy just healing, and give yourself some grace.
• You'll have a lifting limit of five pounds. Our water pitcher is five pounds when full, so I couldn't even fill a glass of water for myself. Use a big cup with a bendy straw so you don't have to lift it, and have your people refill it for you. I was very thirsty - probably due to one or more of the drugs.
• I had this list of things I was going to do during recovery while I was off work. I did not do the things. What I did do was watch a lot of TV. I picked some movies or a TV show with each of the people coming to sit with me, and we binged those together. What you need isn't a list of Things to Do; you need a list of Things to Watch, or maybe Video Games to Play.
• Since you can't shower yet, you'll want to wash off a couple times a day with shower/bathing wipes. Use them liberally, because you'll have extra body odor thanks to the drugs, too. Don't forget deodorant, either. Spray deodorant may be easier to apply right now.
• They'll take the drains out at your first post-op appointment, about a week after surgery. The way they'll do it is untape them, then tell you to breathe out while they gently pull them out in one long motion. It is a very weird feeling as they slither out. Not all that painful, but alarming in its strangeness.

The Next Month - Resting

• At my first post-op, the surgery team gave me a bunch of Ace bandages and told me I could swap them out with the binder as needed. From then on, I wore the binder during the day and two wraps of bandages at night, generally. Swapping back and forth lets it irritate different places so it's not so awful.
• Once the drains are out, you can shower. You'll need to face away from the water so it's not pounding on the incisions, but by this time, you really appreciate the shower. Here again, you'll need a buddy. Because you still can't reach above your shoulder, so you can't wash your hair. You need someone who can reach to wash your hair for you. 
• Even for just washing the body-only, you probably can't reach the shower controls. Or hold the shower head at a good angle. Or dry yourself off well. Shower buddies are important.
• Have a stack of washcloths - or more of those cloth diapers - for patting dry your incisions separately from the towel you reuse for the rest of your body. Soft is important.
• As the tape and glue start peeling off your incisions, have a small pair of scissors for trimming the tape close to the skin so it doesn't rub. In some of the places where they pull the most, you may have a little gap in the tape where you can at least cut across the width of the tape so that it pulls less, and that'll feel better.
• Somewhere in here, you'll go back to work. For me, it worked out well to go back to work half-time, since I work from home. That meant I was still able to take a nap every afternoon. Napping is important at this stage.
• Don't drop off all the meds just because you're doing better. You'll be less exhausted if you hurt less. If you need more of something, ask your surgery team for it.
• Start getting active again, too. I took an extra walk every afternoon, especially when I had someone with me. I didn't have people staying with me at night after the first week, but I did try to have company every afternoon to help me do things.
• At your second post-op appointment, they'll pull off the tapes, if they haven't already come off on their own. Just grip and pull and with very little resistance, you're free!

Two More Months of Recovery

• You'll still feel like you're 'recovering' until at least six weeks post-op. Try not to obligate yourself to anything at all before then, and be kind to yourself even after that if you need more rest or help from someone else.
• Weight restrictions will increase quickly now, but don't push it. Listen to your body about what you can and can't handle. 
• The first bath is a wonderful thing, as well as just being able to wash your own self and dry off without help.
• Something I didn't expect was the tautness of my chest tissue and the skin over it. Not at the incision, but up above. My chest is slightly broader now. Especially if you choose the more athletic look, some of that muscle structure that was buried under breast tissue shifts up a little, and the skin is pulled tight across it. The skin is slowly stretching out now, but everything's tight across my chest where it wasn't before.
• Spending more than a month not lifting anything or reaching above the shoulder left me with some muscle atrophy in my arm, I'm lucky enough to be able to go to Physical Therapy regularly, so that's something we're working on now. If PT is available to you, go to one and ask them to help you recover. Insurance should pay for some amount of PT, and you usually don't need a referral.
• Some things may need later consultation with the surgery team, but after 12 weeks/three months, you're generally considered free and clear to manage yourself. You're 'done' as far as they are concerned.
• My surgery team suggested steroid injections are an option for any scars that keloid, after a year or so.
• Dog-ears, too, can be treated via a minor surgery, called revision, if they are still evident after a year or so.

Scar Management

• Once the tapes are off, you have options for scar management. 
• The more attention you give the scars, the better they will heal. Pay attention to them multiple times a day. This is a good time to make adjustments to a skin-care routine, if you need to.
• The surgery team will instruct you to massage the scars with any emollient you choose. I like grapeseed oil with some arnica and clove oil. Aquaphor, petroleum jelly, moisturizing lotion have all been suggested, as well. Massage it in pretty aggressively two or three times a day. Push hard enough the scar goes white, and go over it a couple of times. You should also massage whenever you're in the shower.
• Another option is getting silicone scar tape. Here's some available from a trans-owned business - Dr. DHT. I suggest cutting the tape in half lengthwise with medical scissors or hair scissors. This makes it a little easier to curve to match the scars, and also makes it last twice as long, cutting the cost in half. Wear it for a few hours at first, gradually stretching it out until you're wearing it for a few days at a time.
• You can't massage with oil over the scar tape, so get a small vibrator - yes, a sex-toy vibrator - and press it down on the scars, massaging them with vibration instead.
• I've settled into putting scar-tape on Saturday afternoon and wearing it through Tuesday evening, when I have a martial arts class that I need to shower after. Then I just massage with oil several times a day and no tapes for the rest of the week. So I'm doing both methods in turn.
• The extra oil will lead to extra acne on your chest; be prepared to manage that, too.
• If you're bigger-bodied, you may have scars that reach all the way back under your arms, and those will probably be the most uncomfortable parts. They may also stick out a little; those are called dog-ears. They'll lessen as you massage them over time. Give them more attention to help them go away.
• Get in the habit of stretching, especially right after you've put oil on the scars. Past six weeks, once you're allowed to reach up, doorframes are very helpful for stretching, especially a narrower doorframe like you sometimes have for bathrooms or closets. 
• Put both hands at shoulder height on the door frame. Step forward so that your arms are pulled back, stretching the chest muscles to the side.
• Put both arms up as high as you can comfortably reach on the doorframe ('touchdown' position). Breathing out, slide your arms a little higher. Do this a few times, until you're reaching as high as you can do without pulling too much.
• Put one arm down by your side and reach up with the other on the doorframe. Then switch arms.
• Grab the doorframe with the fingers of one hand and twist inward, so the arm is pulled across your chest. Then twist outward so the arm is pulled back. Do the same with the other arm.
• Reach behind you and down, grabbing the doorframe behind you about butt-height. Press against the inside of the doorframe, twisting your shoulders and pressing your chest out.
• After 12 weeks, other options may be viable for scar treatment. It seems like the answer is irritating the scars in many small ways to make them heal.
• Using vacuum cups has been incredible for unwrinkling the scars and flattening them out. It's not comfortable, but it works. I have cups myself, so my PT does it once a week and I do it once in-between. Just some gentle movement dragging over the scars with plenty of oil, then let it sit for a few minutes on any place that really needs it. For me, that's right in the center, where the scar's gone a bit hypertrophic, and at each end, where they are more tender.
• She did some dry-needling on the ends of the scars, where they are more sensitive, and the good news is that I still can't really feel that area much for that purpose. And I think they are a little less sensitive now?
• We've done some Summus laser therapy in physical therapy. It's wild feeling this cold or warm item running over the scars, and I can feel the pressure the whole way, but the temperature only registers in some places and not others.
• I also bought a microneedling tool and use it in the shower about once a week.

Additional Resources

Gender Confirmation Center - https://www.youtube.com/@genderconfirmationcenter1826

- has a lot of information about surgery types, advice on post-surgery care, videos of surgery being done, etc.