There are so many websites and blogs to provide mastectomy tips, but I figured I would provide mine too in case they can help someone else.
I had a bilateral nipple sparing mastectomy with reconstruction. The mastectomy was on May 20, 2020 and the reconstruction was on August 4, 2020. Everyone has a slightly different experience, but this is what I learned from mine.
Understanding the surgery:
- Bring someone with to your initial appointment with the breast surgeon and the plastic surgeon. You will likely have a lot going through your head and having another person there to listen is key.
- Meet with the plastic surgeon closer to the mastectomy. Initially, we did not think I would do chemo so we set up an appointment with the plastic surgeon immediately. Then I found out I was doing chemo first and the next day I met with the plastic surgeon. My mind was not really paying attention to him as much as I should have given I was focused on everything I had just learned about chemo. He did a great job of explaining everything, but I met with him in November and did not have surgery until May and August. I should have asked more questions closer to surgery, but I didn’t.
- Ask questions! This your body so ask as many questions as you would like. My doctors were great at answering any questions and I think most doctors would be.
Preparing for surgery:
- Ensure someone will be around for the first few days at least, although I would aim for 1.5 weeks. You will be restricted a lot and you will need help.
- Just plan on not using your arms much for at least a week, probably longer. So that means taking things out of upper cabinets and leaving them on the counter so you can reach them. If you have deep lower cabinets, move things to the front or put them on the counter. I loved when people told me I couldn’t vacuum because I wasn’t allowed to extend my arms…so don’t plan on vacuuming or doing laundry (that was no problem for me).
- Open any pill bottles or ensure someone is around to open them for you. I did not have the strength to open any of them for about a week or more.
- Get ready to use your ab muscles a lot. You cannot use your arm to help you stand up so you will likely get good at rolling out our your position on the couch or bed.
- Fill any of the prescriptions they give you before the surgery. You will likely be on antibiotics for a couple of weeks and they will likely give you some type of pain meds.
- Get a small pillow to use in the car to put between yourself and the seat belt. It helps relieve the pressure.
- Ensure you have clothing that is lose to pull over your head or zip up. My friend gave me this hoodie and it was great to hold the drains.
- Have two lanyards. I had one lanyard to wear in the shower to hold the drains and one to wear other times. Personally, I relied on these and the hoodie way more than pinning the drains to the bra.
- I will stress this again, you will be extremely limited in movement for at least a week. It sucks, but you will want to be ready for it. And I mean limited in all movement, not just your arm movement. I could barely move for a few days. Your body will be exhausted. Ensure someone is able to walk the dog because you won’t make it more than a block or two for a couple of days. Have movies, books, or anything else you can do while seated ready to keep you company.
After surgery:
- Use a water bottle with a straw. The hospital gave me one and it was a lifesaver. Not having to drink out of a glass made my life easier.
- Set an alarm on your phone to take your meds at set times. I had to take antibiotics 3 times a day and the phone alarm made it so we didn’t forget.
- If you do not sleep on your back normally, prepare for awful nights of sleep. I am a side sleeper and of course you can’t do that for a long time. I propped a lot of pillows on my bed so I was elevated. I also put pillows on both sides of me to discourage rolling onto my sides (you will instantly wake up if you try). If you have a recliner, consider sleeping in it. I didn’t have one so I did the best I could with pillows.
- Roll out of bed when you need to get up. Do not try to use your arms to help yourself up.
- Do the breathing exercises they give you. Your chest will be super sore and tight and these help loosen it up and ensure you can continue to take deep breaths.
- Drains suck. I wasn’t exactly sure what to expect even though I had read plenty of blogs. They do not hurt, but are a total inconvenience and uncomfortable. Make sure the person taking you home is told how to strip the drain as you will likely need help with that for at least a few days.
- Call the after hours line if you are concerned about anything. I hate calling those numbers given I don’t want to be a pain, but it didn’t appear that one of my drains was working a few days after surgery. Calling allowed me to stop stressing about something that wasn’t a problem (the drain was doing fine). It is so much easier to call and ask then be stressed and worried.
- Schedule PT appointments. They were incredibly helpful in getting me back to full range of motion.
- Once you can start to walk, do it! Get outside and walk super slowly. It is nice to get some movement in, but make sure you don’t push it and listen to your doctor.
- Expanders are hard…literally. They will feel awkward, but you will slowly get used to them. I did not have any fills with mine (thanks nipple sparring mastectomy), but I am sure there is some pressure and tightness with a fill.
You will get through this. It won’t be fun or comfortable, but it gets better each day. If you are an active person, this will be even harder given you will be restricted for several weeks. Take your time to recover and do not push it.
I hope you never need these tips, but if you do, I am always here to help in any way I can.