Double mastectomy, also called bilateral mastectomy, is when the surgeon removes both breasts. There are
- Skin-sparing or nipple-sparing mastectomy. The surgeon removes the breast tissue, but preserves the majority of the skin, and sometimes the nipple and areola.
- Simple (total) mastectomy. The surgeon removes the breast, areola, nipple, and most of the overlying skin. They may also remove the sentinel lymph nodes.
- Modified radical mastectomy. The surgeon removes the breast, areola, nipple, and most of the overlying skin. They also remove the lining over the chest muscles and sometimes part of the muscle itself, as well as the axillary lymph nodes under the arm.
- Radical mastectomy. This is the removal of the entire breast, areola, nipple, skin, chest muscles, and underarm lymph nodes. Doctors rarely perform this type today.
The surgery usually involves a short hospital stay of 1-3 days and a follow-up in a week or two, but it may be longer if your procedure is more complex, or if you also opt for immediate reconstructive surgery. You also have an option for a delayed reconstruction or no reconstruction at all. The type of mastectomy you have will also impact when you can resume normal activities, which can be four to six weeks or more.
For a major event in your life like surgery, it always helps to know what you can about what lies ahead. In this case, you’ll have two stages of activity: First, you’ll undergo the surgery itself. After the surgery, you’ll go home to recover. Read on to learn what to expect in each stage and how to prepare.
Preparing for surgery
Your doctor will explain the medical specifics. Here are some other 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 seat belt’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, and ideally open at the front. This can help you avoid stretching your arms or pulling your shirt over your head. 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 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.
Have a water bottle available nearby within reach so you can stay easily hydrated. Get all your essentials together such as your phone and the charger, high-protein snacks, and anything else you may need or want. The less you need to get up, the better.
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. Be sure to consider:
- picking up your prescription medications
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.
Have one family member or friend who can help send updates to your larger family-and-friends circle so that you don’t have to communicate with everyone yourself about how you are doing. Additionally, consider trying out a website or app for coordinating people who can help. One example is Caringbridge.org.
What you’ll do if you need more help
Make a list of organizations you can contact if needed. Consider babysitting, housecleaning services, and transportation. The American Cancer Society provides a wealth of information on
How you’ll manage your emotions
With or without reconstruction, having a double mastectomy can be an emotional experience. Know upfront 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.
The process of recovering from mastectomy is different for everyone. One reason it’s so variable is that not all mastectomies are the same.
There’s also an emotional component to mastectomy that may affect your recovery and change over time. Speak to your healthcare team about any distress that you may feel, especially if it interferes with your ability to take care of yourself or if it’s impacting your well-being. The cancer clinic may have professionals who are trained to support people with cancer about their emotional health.
What to know before leaving the hospital
After surgery, you’ll
You’ll be transferred to a hospital room for the night. As your feeling returns, you might feel pain and strange sensations in your chest and underarms.
You’ll receive instructions on:
- managing the drains
- noticing signs of infection, such as blood or fluid collection or lymphedema
- removing bandages
- taking medications
- stretching exercises for arms and shoulders
- returning for a follow-up appointment
- Instructions about when you may return to normal activity
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.
You are probably relieved that the surgery is behind you, and you can begin your recovery process. Expect to have a bit of pain and discomfort. In the beginning, you will probably need to:
- take time off work
- refrain from driving
- get help with daily activities
Your chest, underarm, and shoulder will probably be sore at first. You may also experience numbness across your chest, which may get better, or may be permanent. Your doctor may prescribe pain medication, or you may be able to get by with over-the-counter pain relievers.
If surgical drains were inserted inside your breast area during surgery, they will usually remain in place for about a week or two.
You will need to watch carefully for signs of infection or blood clots, which are a risk of any surgery, including double mastectomies. Be sure to contact your doctor right away if the area of your surgery becomes significantly red, swollen, or warm to the touch. These can be signs of infection, and you may need to take antibiotics.
Guidelines for at-home recovery
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 go for short walks if 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. Also, you’ll probably need to sponge bathe for a while. It may be tedious or uncomfortable, but keep reminding yourself that it’s temporary.
- Your body will heal. You might be told to remove the surgical bandages at home instead of having your doctor do it. You might want to 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.
- It takes time. If you’re not having reconstruction, you may be anxious to get your prosthetics. Know that it takes a few weeks before you’ll be able to get a good fitting.
Possible physical side effects
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 normal.
- 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 having a 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 and mourning
- body image issues
- anxiety over intimacy
- fear of cancer and treatment
You’re entitled to your feelings. You’ll 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 acknowledge that you may be having a hard time.
Tips for coping during recovery
During recovery, you may find it helpful to keep the following suggestions 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.
Recovery time from a double mastectomy varies from person to person. A number of factors can affect the recovery time you’ll need, including:
- underlying conditions
- amount of home care
- type and extent of surgery
- mental outlook
In general, it can take 2-3 weeks for wounds to heal and a few more weeks for you to resume some normal activities, though this likely varies from person to person. If you also had breast reconstruction, your recovery time will probably be a bit longer.
It may take several months before you resume all your previous activities and are fully active again. Your doctor will advise you when you can begin certain activities like driving or returning to work.
Recovering from double mastectomy is unique to each person, 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 you would a dear friend.
You will likely have a double mastectomy if you have a diagnosis of breast cancer and a recommendation from a medical professional. Reasons might include:
- Late stage breast cancer in both breasts. The cancer is late-stage and is present in both breasts. Its stage and characteristics do not make lumpectomy an option.
- Early-stage cancer, but you are high-risk. The cancer is at an early stage, but you are at very high risk of getting a second breast cancer in the remaining breast. Not everyone is high-risk. A high risk includes having the BRCA1 or BRCA2 gene mutation, or a strong family history of breast cancer.
- Contralateral prophylactic mastectomy (CPM). You are not at high risk for getting a second breast cancer, but you want to avoid the worry about it, so you want to have the second breast removed, as well as the diseased one. The medical term for having the second healthy breast removed is contralateral prophylactic mastectomy (CPM).
- Bilateral risk-reducing mastectomy. This surgery is done to reduce the risk of developing cancer in the future, even though you do not have breast cancer currently. It is usually done only if you carry one of the genes linked to breast cancer risk, or you have a strong family history of breast cancer. According to the National Cancer Institute, bilateral risk-reducing mastectomy has been shown to reduce the risk of breast cancer by about
95 percentin women who carry a BRCA gene and 90 percent in women with a strong family history of breast cancer.
Research shows that, except for carriers of the BRCA gene, there
The ASBrS recommends CPM as a good option to consider for female BRCA carriers and those with a strong family history of breast cancer. CPM is rarely a good choice for male cancer, even with the BRCA gene, they say.
In a double mastectomy, a surgeon will remove both breasts. It usually happens to avoid the risk of cancer in a high-risk person or to treat late-stage cancer when other treatments are no longer an option.
If a double mastectomy is the best option for you or your loved one, it’s important to be prepared by understanding how to prepare for the procedure and what to do after the surgery for an easier recovery. Getting the support necessary from family, friends, and breast cancer support networks can also help.