The process of recovering from mastectomy is different for everyone. One reason it’s so variable is that not all mastectomies are the same.
Double mastectomy is when both breasts are surgically removed, but there are several types of surgery:
- Skin-sparing or nipple-sparing mastectomy: The breast tissue is removed, but the skin, and sometimes the nipple and areola are preserved.
- Simple (total) mastectomy: The breast, areola, nipple, and overlying skin are removed. Sentinel lymph nodes may also be removed.
- Modified radical mastectomy: The breast, areola, nipple, and overlying skin are removed. So is the lining over chest muscles and sometimes part of the muscle itself. Axillary lymph nodes under the arm are also removed.
- Radical mastectomy: Removal of the entire breast, areola, nipple, skin, chest (pectoralis) muscles, and underarm lymph nodes. Doctors rarely perform this type today.
The surgery usually involves an overnight hospital stay and a follow-up in a week or two. You can also opt for immediate reconstructive surgery, delayed reconstruction, or no reconstruction at all.
These factors affect the time frame for resuming normal activities, which can be two to six weeks or more. There’s also an emotional component to mastectomy that may impact your recovery and change over time.
Your doctor will explain the medical specifics. Here are also some things to consider in advance:
The drive home
Your surgeon will advise you not to drive, but they might not think to mention that the seatbelt’s shoulder harness can hurt your sore chest. Bring a small, soft pillow to place between your chest and the strap.
What you’ll wear
Inventory your wardrobe and go shopping, if necessary. When you leave the hospital, you’ll still have drainage tubes in your chest. They’ll remain in place for at least a week or two, maybe longer. Your chest and arms will be sore and stiff.
Buy loose-fitting tops that are easy to put on and take off. Choose soft, natural fabrics. Specialty stores carry camisoles and tops with pockets for the drainage bulbs. Or you can clip the bulb to your clothing. A large zip-up hoodie is a good option.
If you’re not having reconstruction and plan to wear prosthetics, hold off on buying mastectomy bras for now. Your size will change as your chest drains and swelling goes down. When you’re ready, your doctor will write a prescription for prosthetics and mastectomy bras, which may be covered by insurance.
What you’ll eat
You may not feel up to cooking, so do what you can in advance. Stock your kitchen and, if time permits, prepare a few meals for the freezer.
How you’ll nest
What helps you feel good? A thick novel, aromatherapy, your grandmother’s afghan? Make sure it’s within easy reach of your favorite comfy chair or sofa.
How you’ll enlist help
Your friends mean well when they say, “Let me know if I can do anything.” But don’t leave it to chance — get your calendar out and get commitments now. Consider babysitting, transportation, and meals. Do you want to be left alone or do you thrive on friends dropping by? Will there be holidays or special events during your recovery? Now’s the time to lay it all out and let people know what you need.
What you’ll do if you need more help
Make a list of organizations you can contact if needed. Consider babysitting, house cleaning services, and transportation. The American Cancer Society provides a wealth of information on support programs and services in your area.
How you’ll handle your emotions
With or without reconstruction, having a double mastectomy can be an emotional experience. Accept up front that whatever feelings you have are valid. You’re allowed to have positive and negative emotions and every type in between. Don’t beat yourself up over any of them. They’re normal. Things won’t change overnight, so give yourself time to sort through it all.
After surgery, you’ll spend a few hours in the recovery room to monitor your vital signs. You’ll have a dressing and several drains coming out of your chest. You’ll have pain medication and your chest will be numb for a few hours.
You’ll be transferred to a regular room for the night. As feeling returns, you might feel pain and strange sensations to your chest and underarms.
You’ll receive instructions on:
- managing the drains
- noticing signs of infection or lymphedema (arm swelling)
- removing bandages
- taking medications
- stretching exercises for arms and shoulders
- returning for a follow-up appointment
In your post-surgical haze, it might be difficult to keep track of discharge instructions. You’ll probably get written instructions, too, but it’s a good idea to have someone else there to listen.
The real process of recovery begins when you get home. It may go more smoothly if you keep these things in mind:
Nutritious food and exercise help recovery. Eat well, do the stretching exercises recommended by your doctor, and throw in a nice walk when you can. It’s good for body and spirit.
The tubes are temporary. You’ll have to empty the drainage tubes and keep track of the amount of fluid you empty from them. If your arms are stiff, you might need assistance with this and you’ll probably have to settle for sponge bathing for a while. If you find that tedious or uncomfortable, remind yourself it’s not permanent. You’ll be tube-free within a few weeks.
Your body will heal. You might be told to remove the surgical bandages at home instead of having your doctor do it. That’s not necessarily bad, It’s just a sight you’ve never seen before. You should probably have someone on hand for support. Remember, you’ve just had surgery and the healing process has only just begun.
It’s OK to call your doctor. You’re expected to call if recovery isn’t going as anticipated. That’s how you’ll get the help you need.
Recovery isn’t a direct route. Some days will seem like two steps forward and one step back. It’s all part of the process. You’ll pull ahead again. If you’re not having reconstruction, you may be anxious to get your prosthetics, but it takes a few weeks before you’ll be able to get a good fitting. Rest assured, you won’t be in limbo forever.
Some potential physical side effects are:
Fatigue: You’ll be tired for a couple of days and it might be hard to get comfortable in bed. Try arranging pillows around your torso or sleeping in a recliner. Get some rest during the day, too.
Phantom feelings: Phantom breast pain isn’t uncommon. You may experience sensations in your chest and underarms, like itchiness, tingling, or pressure. Your chest may be numb or overly sensitive to touch. This is not abnormal.
Trouble with your arms: Mastectomy and lymph node removal affect your shoulders and arms. Stretching exercises and time should take care of pain and stiffness.
Lymphedema: Lymph node removal increases the risk of arm swelling or infection. Try to avoid trauma or injury to your arms. Call your doctor right away if your arms are swelling.
Whatever your reasons for double mastectomy, you’re bound to go through emotional changes. It’s hard to predict how you’ll feel immediately following mastectomy or in the months ahead.
Some common emotions involve:
- sadness, sense of loss, a mourning period
- body image issues
- anxiety over intimacy
- fear of cancer and treatment
Know this: You’re entitled to your feelings. You hear a lot about positive attitude, but that doesn’t mean you have to put on a happy face when you’re not feeling it. It’s fine to admit you’re having a less than spectacular day. Everyone does.
During recovery, you may find it helpful to keep the following in mind:
- Acknowledge your emotions so you can work through them. Share your thoughts with someone you trust.
- If you need some “alone time,” say it and take it.
- When you’re longing for company, tell your friends.
- Get back to your favorite hobbies, books, or movies. Whatever made you feel good before surgery should make you feel good after.
- Check out support groups.
- Tell your doctor if you have intense feelings of depression that won’t go away.
Recovering from double mastectomy is unique to each woman, so resist the urge to hold yourself up to someone else’s standards.
Nobody knows your life better than you do. Offer yourself the same compassion as you would a dear friend.