You are here: Home Managing Your ... Mastectomy 101 Summary
Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Summary

A mastectomy is a surgical procedure which involves removing all of the breast tissue, sometimes along with other nearby tissues.  

There are several types of mastectomy. As stated by the American Cancer Society, they are:

  • Simple or total mastectomy: In this surgery the entire breast is removed, but not the lymph nodes under the arm or the muscle tissue beneath the breast. Sometimes both breasts are removed, especially when mastectomy is done to try to prevent cancer. If a hospital stay is needed, most women can go home the next day. For some women who are planning on having reconstruction right away, a skin-sparing mastectomy can be done. For this, most of the skin over the breast (other than the nipple and areola) is left intact. This can work as well as a simple mastectomy. The amount of breast tissue removed is the same as with a simple mastectomy. Although this approach has not been used for as long as the more standard type of mastectomy, many women prefer it because there is less scar tissue and the reconstructed breast seems more natural.
  • Modified radical mastectomy: This operation involves removing the entire breast and some of the lymph nodes under the arm. This is the most common surgery for women with breast cancer who are having the whole breast removed.
  • Radical mastectomy: This is a major operation where the surgeon removes the entire breast, underarm (axillary) lymph nodes, and the chest wall muscles under the breast. This surgery was once very common, but it is rarely done now because modified radical mastectomy has proven to work just as well. But this operation may still be done for large tumors that are growing into the muscles under the breast.

A mastectomy is usually done in a hospital, with a stay of a few days.

Immediately after the surgery, you will have a bandage over your breast area and there may be one or more tubes in your breast or underarm area. If a drain is left in when you go home, this does NOT indicate a problem. (To learn more, see: What To Expect After A Mastectomy)

Before leaving the hospital, find out what you can and cannot do, and for how long. Preferably get the instructions in writing. For additional questions to ask, click here.

If mastectomy is covered by your health insurance, the odds are that reconstruction is also covered. For information, click here. If not, see Uninsured for tips about paying for reconstruction.

NOTE:

  • Check the hospital bill before you leave - or soon after you get home. A high percentage of hospital bills have mistakes - usually in the hospital's favor. (Click here to learn how to check a hospital bill).
  • Hospital bills are negotiable. To learn how to negotiate the amount owed to a hospital bill, click here.

Questions To Ask Before Going Home After A Mastectomy

The following questions are based on the American Cancer Society offsite link recommendations of questions to ask before leaving the hospital after a mastectomy*:

How To Take Care Of Your Body

  • How to take care of the wound and bandage
  • How to take monitor drainage and take care of the drains
  • How to know if you have an infection
  • What medicines to take (including pain medicines) and how often
  • When to call your doctor or nurse (and how)
  • Any restrictions on activities
  • What to expect regarding sensations in the breast and arm
  • What to expect regarding feelings about body image
  • What can I do to avoid getting lymphedema

How To Get Back Into Your Life

  • What to eat and what not to eat
  • What activities you should or should not do
  • How soon you can return to work
    • Should the return be part time? If so, for how long?
    • Is there anything at work that I should not do? If so, for how long?
    • Will I need a change in my job (an "accommodation") to help me do my work? If so, for how long?

How To Get Used To Your Body After Surgery

  • When to start using your arm
  • How to exercise your arm to keep it from getting stiff
  • When you can wear a breast form (padding shaped like a breast that can be worn under the clothing)
  • What to do about feelings you may have about how you look  
  • How to get in touch with an American Cancer Society Reach to Recovery volunteer. Reach to Recovery is a program in which breast cancer patients can talk by phone or face-to-face with breast cancer survivors.

  *Breast Cancer Clear & Simple, Atlanta, American Cancer Society, 2008; A Breast Cancer Journey, Atlanta, American Cancer Society, 2001.

What To Expect After A Mastectomy

A mastectomy is usually done in a hospital.

Immediately after the surgery, you will be moved to a recovery room which is where you will wake up.

  • You will have a bandage over your breast area. 
  • There may be one or more tubes in your breast or underarm area. These are drains to remove blood and lymph fluids that can collect while you heal. (They may stay in when you go home. It is not unusual for drains to stay in for as long as a week). If a drain is left in, it is NOT a sign that something is wrong.

You will likely also be hooked up to:

  • An i.v. drip to keep fluids moving through your system. The drip may also include antibiotics to keep away unnecessary infections and other medicine. 
  • Monitoring machines, such as an EKG (a heart monitor). 

Family members are usually allowed to visit in a recovery area, but generally only for a limited amount of time, such as 10 minutes per hour.
When you are fully awake and your bodily functions are stable, you will be moved to a room. 

You will likely stay in the hospital for one or two nights.

While in the hospital:

  • It is up to you to be sure that you receive drugs and other treatments when you are supposed to, and that you are not unnecessarily exposed to risk of infection. Ideally, you will have a person who can act as your patient advocate with you as much time as possible so he or she can take over the function. For example, it is best not to let anyone touch you who has not disinfected his or her hands by washing (cleansing lotions do not kill all potential germs). For additional information, see the document in To Learn More.
  • Keep track of the services you receive so you can check your bill when you are discharged. This is important to do even if you have insurance. Overcharges show up as higher premiums.

Before leaving the hospital:

  • Find out what you can and cannot do - preferably in writing. For example, showering, taking a bath, exercise, lifting light or heavier objects.
  • Get a copy of the bill and check it - or ask someone to do it for you. Professionals are available if needed. (See the Survivorship A to Z document in To Learn More).
  • Get a printed form from your doctor telling you what you should do,  as well as what you can and cannot do. The American Cancer Society recommends that you at least ask the questions we have included in the document in To Learn More. As you will see, there is space to write the answers. You can print the form and take it with you to the hospital.   
  • Let your doctor know how well you do or do not tolerate pain so the doctor can prescribe appropriate medication. Keep in mind that as a general matter, doctors tend to under treat pain. Pain can slow healing. Let the doctor know if you want to be pain free. It is a myth to think that people who are prescribed pain medication will become addicted. Get the prescription filled before leaving the hospital. (If you can't get the prescription filled, the hospital pharmacy can give you a few pills to start or you can take pain medication just before leaving the hospital to give a friend time to fill your prescription). (See the document in To Learn More to learn about pain and treatment for pain).
  • If you do not have reconstructive surgery at the same time as your mastectomy, ask about when you can start wearing a breast form (prosthesis). (Tips about breast forms are in the document in "To Learn More."

NOTES: 

  • You may experience Post-mastectomy Pain Syndrome (PMPS) after a Mastectomy. PMPS is chronic nerve (neuropathic) pain. According to the American Cancer Society, the classic signs of PMPS are chest wall pain and tingling down the arm. Pain may also be felt in the shoulder, scar, arm, or armpit. Other common complaints include numbness, shooting or pricking pain, or unbearable itching. Let your doctor know if you have any of these symptoms. PMPS can be treated with medications that work for nerve pain
  • If you haven't already, consider reconstruction of your breast. If your health insurance pays for a mastectomy, it likely also pays for reconstruction.
  • Check the hospital bill before you leave - or soon after you get home. A high percentage of hospital bills have mistakes. (Click here to learn how to understand a hospital bill). If necessary, learn how to negotiate the amount you owe a hospital. Click here.

Health Insurance: Reconstruction After Mastectomy

Federal law, and the laws of many states, require insurers to cover breast reconstruction if the cost of a mastectomy is covered.

State laws: For a list of the state laws concerning covering the cost of reconstruction, see the American Society of Plastic Surgeons'  web site at www.plasticsurgery.org  offsite link

Federal Law: The Women’s Health and Cancer Rights Act of 1998 (WHCRA) requires that health plans which cover a mastectomy must also cover:

  • Reconstruction of the breast on which a mastectomy has been performed.
  • Reconstruction on the other breast to produce a symmetrical appearance.
  • Prostheses and physical complications at all stages of mastectomy, including lymphedemas.

This coverage can be subject to annual deductibles and co-insurance consistent with those established for other benefits under the plan or coverage. 

The plan must furnish a written description of this benefit upon enrollment in the plan and each year thereafter. According to the Department of Labor, the annual notice can be delivered anytime during a plan year. The notice may be separate or may be included in other communications.

WHCRA applies to all group and individual health plans, and their insurance companies or HMOs that provide coverage for medical and surgical benefits with respect to a mastectomy.