What to Expect in a Double Mastectomy, and what is the Recovery Time?

A double mastectomy refers to the surgical removal of both the breasts. People undergoing a double mastectomy not only have to consider the physical recovery after the surgery but also the emotional toll and recovery that will take perhaps weeks or even months after the procedure.

The process of recovering from a double mastectomy is different for each person. One of the main reasons for this is because all the mastectomies are not the same. There are various types of surgeries done to remove both the breasts and the recovery process and time also depends on such factors. Here’s what to expect in a double mastectomy and what is the recovery time.

What is a Double Mastectomy?

A double mastectomy is a procedure to surgically remove both breasts.(1) According to research, nearly 17 percent of women with breast cancer (early-stage) have to undergo a double mastectomy.(2) There are several types of surgical techniques that are used to perform a double mastectomy. These include:

Simple or Total Mastectomy: In this procedure, the nipple, areola, breast, and most of the surrounding skin are removed. In some cases, the sentinel lymph nodes may also need to be removed.(3)

Nipple-sparing or Skin-sparing Mastectomy: This procedure involves the removal of the breast tissue while trying to preserve the areola, nipple, and majority of the skin.(4)

Modified Radical Mastectomy: This surgical procedure involves the removal of the breast, nipple, areola, and most of the surrounding skin. The lining over the chest muscles and sometimes even part of the chest muscle is also removed. The axillary lymph nodes located under the arm are also taken out.(5)

Radical Mastectomy: This is one of the most extreme forms of mastectomy, and doctors rarely perform this type of surgery anymore today. In this procedure, the entire breast, nipple, areola, chest muscles, skin, and underarm lymph nodes are all removed.(6,7)

Recovery from a Double Mastectomy

The recovery process from a double mastectomy differs for everyone and depends on what type of surgical procedure is used. Any of these surgical techniques involve a short hospital stay, followed by a follow-up after a week or two. Many women also opt for having immediate reconstructive surgery, delayed reconstruction surgery, or no reconstruction during the mastectomy.(8,9)

The recovery time after a double mastectomy differs from person to person but tends to be around four to six weeks on average. However, if you choose to undergo breast reconstruction at the same time, it can increase the time and complexity of the overall recovery process.

Apart from the physical recovery following a double mastectomy, there is also the factor of emotional recovery to consider after such a surgery. The emotional component may also have an effect on your recovery time.

How to Prepare for a Double Mastectomy Surgery?

While your doctor will explain all the medical details about the surgery to you beforehand, here are some things you can consider that will help you prepare for the surgery in advance:

You will be advised not to drive after the surgery. One thing that your healthcare team sometimes forgets to tell you is that the shoulder harness of the seatbelt can hurt your recently operated chest. It will help if you bring a small, soft pillow to keep between the strap and your chest.

You will be leaving the hospital with some drainage tubes still in place in your chest. These drainage tubes remain in place for at least a week or even two, or longer depending on your condition. You will find that your arms and chest will be stiff and sore. It is recommended to have loose-fitting tops that are easy to wear and take off. Opt for soft and natural fabrics. Some specialty stores also have tops and camisoles that have pockets inbuilt for the drainage bulbs. If the weather is cold, wearing a large zip-up hoodie can help. If you are having trouble managing the drainage bulbs, you can clip them to your clothing as well.

If you plan to have breast reconstruction and have plans to wear prosthetics, you should not buy any mastectomy bras for the time being. This is because there will be a change in your size as the swelling from the surgery goes down. Once you are ready and the swelling has settled, your doctor will prescribe prosthetics and mastectomy bras. This is important because many insurance companies cover such expenses, but only with a doctor’s prescription.(10)

It is essential to be prepared about what you will be eating once you return home from the surgery. The last thing you may feel like doing is cooking. So plan in advance. Stock up your kitchen and, if possible, prepare some meals and put them in the freezer.

If you live alone, have a social group in place. Friends or family members who can drop in from time to time and help you with meals, transportation, or even babysitting.

There are many organizations that you can contact for help if needed. The American Cancer Society provides a lot of information on various support services and programs in your area. There are different support groups as well that can be a great resource of information for women who have undergone a mastectomy.(11)

A part of your recovery process also involves dealing with the emotions that come with having a double mastectomy. Regardless of whether you are getting breast reconstruction or not, a double mastectomy takes an emotional toll. It is essential that you are aware that whatever feelings you have are entirely valid. It is normal to have both negative and positive emotions. While things won’t change overnight, but over the recovery period, you will come to terms with these emotions as well.

What to Expect Before Leaving The Hospital?

After you have had your surgery, you will have to stay in a recovery room for a couple of hours so that your doctor can monitor your vital signs. Remember, you will have a dressing, and there will be numerous drains or tubes coming out of your chest. You will be given pain medication, and this will make your chest feel numb for the next few hours. You will then be transferred to a room for the night. As the medication and anesthesia wear off, you will start feeling the pain and strange sensations in your underarms and chest. It is normal to feel these.

Your medical team will give you instructions on the following:

  • How to manage the drains
  • How to shower
  • How to remove the bandages
  • When to take your medications
  • How to do stretching exercises for the arms and shoulders
  • When to return for a follow-up appointment
  • What to do if you notice signs of infection, such as fluid collection, blood, or lymphedema

In a condition of your post-surgical haze, it might be challenging to keep track of all the discharge instructions you are being given, but your medical team will also be giving you a set of written instructions. Having someone else present with you at that time is a good idea as they can help you with the things later on.

Recovering at Home Following Double Mastectomy

The actual recovery will begin once you reach home. Here are some things to keep in mind to make your recovery process a smooth one:

  • Eat a healthy and well-balanced meal. Along with a nutritious diet, you need to do light stretching exercises that are recommended by your doctor. You can also go on short walks to get out of the house. Regular light exercise will help you recover faster.
  • Remember that your drainage tubes are only temporary. These tend to frustrate patients a lot, especially having to emptying them out and keeping track of the amount of fluid that has been emptied. If your arms feel stiff due to the tubes, you may need help in emptying out the drainage tubes. It is also better if you stick to taking sponge baths, at least till the tubes are taken out. Remember that these drainage tubes are only temporary, and the discomfort will soon pass.(12)
  • Your doctor might have told you to remove the surgical bandages at home itself instead of having to head to the hospital again to have them removed. It is best to have someone assist you in removing these. It is important to remember that you have just had surgery, and your body is still healing. It is necessary to remove these bandages very carefully.
  • If you believe that your recovery process is not going as expected, do not hesitate to call your doctor. You should also contact your doctor if you notice any signs of infection.

Remember that recovery will not happen overnight. It is a step by step process. You might be waiting to get your prosthetics if you are not undergoing reconstruction, but that step will also take a couple of weeks before the swelling settles down and you are able to get a good fitting.

Physical and Emotional Side Effects of a Double Mastectomy

Here are some of the potential physical side effects that you may experience after having a double mastectomy;

Fatigue: A double mastectomy is a major surgical procedure, and it is natural to feel too tired to do anything for a couple of days following the surgery. It will be difficult to find a comfortable position in bed, and this can make it challenging to get a good night’s sleep. You can try sleeping in a recliner or arranging pillows around yourself to make yourself comfortable. Remember, there is no harm in resting during the day as well. The more you rest, the more your body is able to heal.

Trouble with your arms: Removal of the underarm lymph nodes along with a mastectomy can affect your arms and shoulders. You are likely to feel stiff and sore around these parts. Doing regular but light stretching exercises as prescribed by your doctor and giving it time to heal will take care of the stiffness and pain eventually.

Phantom pain: It is normal to experience phantom feelings. Many women report feeling phantom breast pain. You may continue to feel itchiness, pressure, or tingling sensations in your underarms and chest. When you touch your chest, it may feel numb or sometimes overly sensitive. All of these are normal feelings.(13)

Lymphedema: In women who have lymph node removal along with a mastectomy, there is an increased risk of infection or arm swelling. This is why it is advisable that you try and avoid any type of injury or trauma to your arms after the surgery. If you notice any swelling in your arms, you should immediately let your doctor know.(14,15)

Regardless of the reasons behind why you needed to undergo a double mastectomy, everyone goes through an emotional upheaval after the surgery. It is challenging to predict exactly how you will feel immediately after the surgery or during the recovery phase ahead. It is common to feel:

  • Body image issues
  • Sadness
  • A sense of loss
  • Mourning
  • Anxiety over being intimate again
  • Fear of the cancer returning and treatment

All these feelings are valid, and you are entitled to feel this way. Everyone hears a lot about being positive for better healing, but at that moment, it is difficult to put aside these anxieties and pretend to be happy. You don’t need to put on a happy face if you are anxious. It is okay to acknowledge that you are having a difficult time dealing with a double mastectomy. There is no shame in wanting to be alone. Or, if you wish for the company of your friends, reach out to them to let them know.

It is important that if you are experiencing intense feelings of depression that you just can’t shake off, inform your doctor. Sometimes talking to a professional and taking therapy can help speed up the recovery process.

Conclusion

The recovery process from a double mastectomy is not an easy process, and each person goes through it in a different way. Resists the urge to compare your recovery to others. Do not set impossible standards for yourself to meet. Nobody is judging you, and there is no race to recover in minimal time. You can take all the time you need and take the help of your healthcare team as you recover from a life-changing surgery. The most important thing is to treat yourself with compassion during this time.

References:

  1. Cancer.org. 2020. Mastectomy | Mastectomies For Breast Cancer. [online] Available at: <https://www.cancer.org/cancer/breast-cancer/treatment/surgery-for-breast-cancer/mastectomy.html> [Accessed 20 November 2020].
  2. Jagsi, R., Hawley, S.T., Griffith, K.A., Janz, N.K., Kurian, A.W., Ward, K.C., Hamilton, A.S., Morrow, M. and Katz, S.J., 2017. Contralateral prophylactic mastectomy decisions in a population-based sample of patients with early-stage breast cancer. JAMA surgery, 152(3), pp.274-282.
  3. Fisher, B., Redmond, C., Fisher, E.R., Bauer, M., Wolmark, N., Wickerham, D.L., Deutsch, M., Montague, E., Margolese, R. and Foster, R., 1985. Ten-year results of a randomized clinical trial comparing radical mastectomy and total mastectomy with or without radiation. New England Journal of Medicine, 312(11), pp.674-681.
  4. Carlson, G.W., Bostwick 3rd, J., Styblo, T.M., Moore, B., Bried, J.T., Murray, D.R. and Wood, W.C., 1997. Skin-sparing mastectomy.
  5. Oncologic and reconstructive considerations. Annals of surgery, 225(5), p.570.
  6. Madden, J.L., Kandalaft, S.O.U.H.E.I.L. and Bourque, R.A., 1972. Modified radical mastectomy. Annals of surgery, 175(5), p.624.
    2020. Mastectomy. [online] Available at: <https://www.hopkinsmedicine.org/health/conditions-and-diseases/breast-cancer/mastectomy> [Accessed 20 November 2020].
  7. Turner, L., Swindell, R., Bell, W.G., Hartley, R.C., Tasker, J.H., Wilson, W.W., Alderson, M.R. and Leck, I.M., 1981. Radical versus modified radical mastectomy for breast cancer. Annals of the Royal College of Surgeons of England, 63(4), p.239.
  8. D’Souza, N., Darmanin, G. and Fedorowicz, Z., 2011. Immediate versus delayed reconstruction following surgery for breast cancer. Cochrane Database of Systematic Reviews, (7).
  9. Stevens, L.A., McGrath, M.H., Druss, R.G., Kister, S.J., Gump, F.E., Forde, K.A. and Goin, M.K., 1984. The psychological impact of immediate breast reconstruction for women with early breast cancer. Plastic and Reconstructive Surgery, 73(4), pp.627-628.
  10. Breast Cancer Now. 2020. Finding A Suitable Bra. [online] Available at: <https://breastcancernow.org/information-support/facing-breast-cancer/living-beyond-breast-cancer/bras-after-surgery-breast-cancer> [Accessed 20 November 2020].
  11. Cancer.org. 2020. Find Local Cancer Support Programs | Cancer Support Groups. [online] Available at: <https://www.cancer.org/treatment/support-programs-and-services.html> [Accessed 20 November 2020].
  12. Kim, M.H., Lee, K.Y., Park, S., Kim, S.I., Park, H.S. and Yoo, Y.C., 2017. Effects of systemic lidocaine versus magnesium administration on postoperative functional recovery and chronic pain in patients undergoing breast cancer surgery: a prospective, randomized, double-blind, comparative clinical trial. PloS one, 12(3), p.e0173026.
  13. Steegers, M.A., Wolters, B., Evers, A.W., Strobbe, L. and Wilder-Smith, O.H., 2008. Effect of axillary lymph node dissection on prevalence and intensity of chronic and phantom pain after breast cancer surgery. The Journal of Pain, 9(9), pp.813-822.
  14. Rockson, S.G., 2001. Lymphedema. The American journal of medicine, 110(4), pp.288-295.
  15. Omar, M.T.A. and El Morsy, A.M., 2011. Treatment of post-mastectomy lymphedema with laser therapy: double blind placebo control randomized study. Journal of Surgical Research, 165(1), pp.82-90.

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