You are here: Home Managing Your ... Breast Cancer Advanced Breast ... Learn About The Tests ...
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.

Learn About The Tests Your Doctor May Suggest.

The basic test for determining whether you have cancer, and if so, what type, is a biopsy. 

Additional tests you may be requested to take include the following. For information about each test, click on the link:

It is also helpful to know who the professionals are who you are likely to run into, and what each of them does. See Professionals You Are Likely To Run Into: Cancer




Summary

Breast cancer is not what it used to be. Treatments have come a long way.

Think about your goals and commit yourself to doing every thing you can to reach them.

Do not make a treatment decision before you have to. Some patients feel that if this is cancer "I ought to be doing something within 24 hours of diagnosis. However, statistics show this is not true.  Deciding on a treatment is not usually an emergency type decision, In fact, you may have up to 30 days to make a decision without harm. Ask your doctor how much time you have to make a decision. Use the time to allow your emotions to settle so you can:

  • Get an understanding of what generally happens with breast cancer
  • Find the best doctor for you and your needs
  • Learn about the tests your doctor may suggest. 
  • Learn the pros and cons of all available treatments
  • Select a person to act as a patient advocate to go with you to doctor appointments, at least until a treatment decision is made. 

Best results occur for women who choose the best available cancer doctors - doctors who are qualified by training and experience, and who perform a large number of the treatment you decide upon. 

  • The quality of the facility in which the doctors work is also important. 
  • Also consider whatever other factors are important to you when considering a doctor and a treatment facility.
  • You can interview more than one doctor who fits your criteria before making a decision.
  • Since you will likely have more than one cancer doctor, if a team leader doesn't emerge naturally, pick one of the doctors to be the leader.

Seriously consider getting a second opinion. Doctors who work with breast cancer are used to patients asking for a second opinion. 

  • According to Consumer Reports on Health, a second opinion changed the original recommendations for more than half of the breast-cancer patients in a 2006 study. A second opinion also uncovered problems missed by the original caregiver. A second opinion is particularly warranted if the diagnosis is of an unusual form of breast cancer or if it is Stage 2 and has spread beyond your breast.
  • Second opinions should be from a doctor who is not connected with the first one. Consumer Reports recommends that the opinion be from a doctor connected with a comprehensive cancer center that takes a team approach.
  • If you are not satisfied after a second opinion, consider getting the doctors to speak with each other to see if they can resolve their differences. Also consider continuing to get opinions until you are satisfied that you can make a decision about how to proceed, and with which surgeon. Don't use the quest for additional opinions unduly delay the start of treatment.
  • Check your insurance to see whether a second opinion will be covered. If it is not, consider paying for it yourself. 
  • Do not use choosing an oncologist as an excuse to put off treatment.

When it comes to making a medical decision:  

  • Decide who you want to make medical decisions (for example, you, a family member, or a particular doctor). 
  • Learn the basics about breast cancer and your specific diagnosis. [If you have advanced breast cancer (Stages III or IV), click here].
  • Learn the pros and cons about available medical treatments such as chemotherapy, surgery (lumpectomy or mastectomy), and radiation.  
  • If you have a choice between a lumpectomy and a mastectomy, cosmetics should not be the deciding factor. Reconstruction after a mastectomy is now so refined that women who have reconstructions report feeling good about their appearance. If reconstruction is done at the same time as the surgery, you do not even have to wake up and see one side of your body different from the other. 
  • So called "alternative treatments" should only be considered complementary to Western medicine, not instead of it. There is no scientific proof such treatments by themselves cure breast cancer.
  • If you choose chemotherapy and want to preserve the ability to have a child, options are available.
  • Ask all questions of concern to you about the treatment plan you are leaning toward using. 
  • Consider looking at published treatment guidelines such as the guidelines published by National Comprehensive Cancer Network (NCCN) offsite link, and/or hiring a research firm to uncover all available treatments including cutting edge experimental treatments and possibly adding another opinion.
  • Make a treatment decision based on your own lifestyle and beliefs.
  • The decision making process is likely to be easier if you speak with at least one person who has gone through what you are. Information from a support group of other women with breast cancer may also provide practical tips.

When a drug is recommended, keep in mind that all drugs have risks as well as the benefits. Learn what they are.

Learn how to maximize your limited time with a doctor. Learning about your condition and the basic medical terms helps.

Gather the tools you need to make the process easier - for instance, a method of recording your appointments.

Keep in mind that drugs and treatments do not work in a vacuum.

  • Start adopting a healthy, cancer prevention, lifestyle. With prostate cancer, this particularly includes deceased meat and milk consumption. 
  • If you smoke, use the diagnosis as a wake up call to quit.
  • Start getting exercise. It doesn’t have to be in a gym.
  • Get needed rest and sleep.

NOTE:

  • Pain does not have to be part of a health condition. If you have pain, speak with your doctor about alternatives for getting rid of it, or at least decreasing how much it hurts. There are even doctors (known as Palliative Care Specialists) who specialize in treating pain and reducing symptoms. You can receive palliative care at the same time as you work to cure your condition.
  • To stay in control of your medical care even if you become unable to speak for yourself, consider writing a Healthcare Advance Directive such as a Living Will. The documents are free and easy to obtain. You don't need a lawyer to complete them.
  • To learn how to finance treatment, click here.
  • Once you have made your decision, see: Managing Your Medical Care: Part II: Once A Treatment Decision Is Made

For more information, see:

Breast Cancer Is Not What It Used To Be.

  • Things have become much better. 
  • For the great majority of women, breast cancer becomes a chronic condition that you can live with. Breast cancer is generally treatable. Even if your diagnosis seems forbidding, keep in mind that many women respond to the latest treatments. You could be one of those people.
  • What you know about what happened to other women with breast cancer is not necessarily what will happen to you. Even if another woman's breast cancer is the same type and subset as yours, every case is highly individual. No one can precisely predict what the course of your condition will be, or how any individual will respond to a particular treatment. This uncertainty is reason for hope.
  • Disfiguring radical mastectomies which removed the breast and a lot of the surrounding tissue are no longer needed. Most women are treated with a lumpectomy, a procedure that saves the breast. If a breast has to be removed, mastectomy is less invasive than it used to be. Reconstruction can be done during the same operation as a mastectomy.
  • Breast cancer can be talked about openly, even at work. 
  • Emotional support from other women who are experiencing or have experienced a similar situation is available in group settings (support group or self help group) and/or one-on-one with a cancer buddy - including over the internet. (You can also learn a lot of practical information from other men dealing with the same situation).
  • Experience indicates that physical relations between couples ultimately return to being satisfying and loving. Single women successfully return to dating.

Take Time Making A Treatment Decision

As a general matter, a decision about what treatment to take does not have to be made immediately. In fact, according to Dr. Peter I Pressman, a noted oncologist specializing in breast cancer: "A sensible goal is to have treatment under way within three to four weeks after diagnosis…. Though growth rates for different types of breast cancer can vary, there is no evidence of a measurable change for any of them in a period of three or four weeks. " To put it another way, there are no breast cancer emergencies. 

All too often, a decision about what treatment(s) to undergo is unnecessarily made during the first visit to a cancer doctor. There is less likelikhood of having a regret about your treatment decision if you take time to let the emotions that appear on diagnosis settle so you can make a decision with a more clear head, do some research about potential treatments, and possibly get a second opinion.

Ask the doctor who diagnosed you how long you have to begin treatment. You can then work backwards to set dates by which the various aspects of what needs to happen prior to treatment actually happen.

NOTE: If you become so anxious and frightened that you become unable to think straight or take action, consult with a mental health professional who can help reduce anxiety enough so that you can participate in the decision. (See "To Learn More.")




Commit Yourself To Doing Everything You Can To Beat Your Disease.

A growing body of evidence indicates that patients who actively participate in their health care do better than patients who don't. The great majority of "how to" books and articles by long term survivors talk about the importance of:

  • Being pro-active. (The other sections of this document help you learn how).
  • Understanding that no one cares as much about your health and well being as you do. It is your job to make the health care system work for you.
  • Adopting a cancer preventive lifestyle in addition to using available treatments and drugs. 
  • Getting emotional support which helps make medical decisions and care easier, as well as day-to-day living. Emotional support is available in a variety of ways. (See Emotional Well Being).

Having no regrets is important for emotional well-being. For survivors, this seems to depend far more on having gone through a reasonable decision making process than on whether or not the outcome was the one desired.




Think About Your Goals

Consider what is important to you.Prioritizing your goals will help when it comes time to make medical decisions. For instance:

  • Beating breast cancer
  • Keeping a clear head because of work
  • Minimal time off work 
  • A treatment covered by your health insurance
  • Minimal out of pocket expense
  • A treatment close to home
  • Minimal amount of pain
  • Treatment by a particular doctor
  • Treatment in a particular hospital or treatment center

It may help to list your goals on Survivorship A to Z's prioritizer. You can save the document and add to it over time. With the press of a button, your list will be reordered to your priority. 




A General Overview Of What Happens After A Breast Cancer Diagnosis

As a general matter:

  • Treating breast cancer starts with a biopsy - a surgically removed sample of your particular cancer. A biopsy is the key to making a diagnosis of breast cancer. (If you have not had a biopsy, or if you had a biopsy but have not received the results yet, read: Managing Your Medical Care: Prior To Diagnosis)
  • The type of cancer is described in a report known as a Pathology Report. Doctors use it to assess the risk and choose the appropriate treatment.
  • Additional tests provide staging - a categorization of your particular situation.
  • The first line of treatment is usually surgery to remove the tumor. This is done by a medical specialist known as a surgical oncologist. 
    • Surgery removes part of the affected breast ("lumpectomy"), more of the breast (a "Quadrantectomy"/"partial mastectomy") or all of the breast ("mastectomy"). Current mastectomies are less disfiguring than previously. 
    • A lumpectomy or mastectomy may be followed by cosmetic surgery by a plastic surgeon. (This can generally be done during the same operation as the lumpectomy or mastectomy). With a lumpectomy, you are left with a scar and sometimes a dimpling of the skin which can be filled in. With a mastectomy, the breast can be reconstructed. As a general matter, if the initial surgery is covered by health insurance, so is breast reconstruction.
  • Surgery is generally followed by chemotherapy and/or radiation.                                      
    • Chemotherapy is generally performed by a medical specialist known as a medical oncologist. Radiation by a radiation oncologist.
    • Which treatment will be recommended, if any, depends on the type of breast cancer, your staging and receptors. 
    • Whether or not to undergo these treatments, and if so, which ones, is up to you. The decision is generally made after consultation with medical and/or radiation oncologists by balancing benefits, risks and short and long term side effects.
    • Not all cancer treatments harm fertility. However, if the treatment you may receive does include a risk of infertility, fertility preservation treatments are available. The earlier you discuss your options, the greater the chance of maintaining your fertility.
  • Treatment is generally followed by a prescription for medication to help keep cancer in check.
  • No one doctor provides all the care for a woman with breast cancer. Instead, a team of specialists is involved. 
    • The team generally includes a surgeon, a specialist in radiation and a specialist in chemotherapy.
    • The surgeon typically starts off as the leader of the team. 

Learn About Your Specific Diagnosis.

There is a medical learning curve required to be an informed consumer. You do not need to learn enough to become a doctor. You only need enough information to be able to have a precise discussion with your medical team and to be able to make informed decisions.

At first glance, it may seem like a lot to learn in a short period of time. However, the amount of time and energy required will be lessened if you limit what you access to your diagnosis, the tests your doctor is proposing, and the likely treatments (and side effects) that fit within your own priorities.

How much beyond the bare minimum to learn is up to you.

At least learn the following:

    • What type of breast cancer do I have?
    • What is the stage of my breast cancer?
    • If it has spread, where has it spread to?
It is helpful to understand the make up of a breast and how breast cancer can spread.

If you do not already know about the make up of a breast and the lymph system through which breast cancer can spread, now is the time to learn.

A description and easy-to-understand drawing of the internal workings of a normal breast and the lymph system through which breast cancer can spread is available at the website of the American Cancer Society: www.cancer.org offsite link.

Cancer terms you need to know

Learn basic cancer terms to know. For example:

  • A lumpectomy (Lump-ech- tuh-me) is the removal of a tumor and some normal breast tissue. In most cases, you are left with a small scar.
  • A mastectomy (Mas-TEK-tuh-me) is the removal of breast tissue and skin, including the tumor.
  • A double mastectomy is the removal of both breasts.
  • Metastasis (meh-TAS-tuh-sis). Sometimes cancer cells break away from a tumor and spread to other parts of the body through the lymphatic system or bloodstream. The cells can settle in other places in the body and form new tumors. This is called metastasis. Even when cancer has spread to a new location in the body, it is still named after the part of the body where it started. If breast cancer spreads from the breast to the bones, it is still called breast cancer.

The American Society of Clinical Oncologists provides a list of cancer terms that you are likely to encounter at www.cancer.net offsite link. The American Cancer Society web page noted above also includes brief descriptions of different types of breast cancer and common terms. See: www.cancer.org offsite link.

Where to find your diagnosis

The kind of breast cancer you have is stated in a pathology (path-AWL-uh-gee) report.

  • A pathology report is a report about what was revealed by the sample taken during a biopsy. It explains the type of breast cancer you have and how big the tumor is. It also states whether your tumor is likely to grow quickly or slowly. The pathology report may use a system of numbers and letters to show how serious your cancer is and your cancer stage.
  • A pathology report is supposed to be written in language that lay people who are not medical experts can understand.

The different types of breast cancer

To learn about each of the following types of breast cancer, including what each type looks like compared to normal cancer cells, we provide links to the website of the College of American Pathologists:

If you have lobular carcinoma in situ (LCIS), this is not a "true cancer". No immediate or active treatment is recommended for most women with LCIS. For American Cancer Society recommendations about follow-up exams see: www.cancer.org. offsite link

Your Stage

You can learn about breast cancer stages, including the tests used to help determine the stage, at the American Cancer Society's Web site: www.cancer.org. offsite link

Statistics

If you are interested in the statistics about what happens to people with your breast cancer diagnosis, the statistics are available on the American Cancer Society Web site (click here offsite link). Keep in mind that statistics are about large numbers of people, and are about the past. They do not take into account continuing medical advances. They also do not indicate what will happen to any individual, much less to you.

NOTE: You do not have to live with pain, or other difficult side effects of your condition, drugs or treatment. There are remedies available. Talk with your doctor.

Choose The Best Available Cancer Doctor (An Oncologist).

Doctors who specialize in the treatment of cancer are known as Oncologists (on -col-o-gists). 

The three primary types of oncologists are:

  • Surgical oncologists who specialize in the surgical removal of cancer tumors.
  • Medical oncologists who specialize in chemotherapy treatments.
  • Radiation oncologists who specialize in treating cancer with radiation.

Take time choosing the best cancer doctors available. Many people make the choice by the seat of their pants, often on the belief that a choice has to be made right away. In fact, there is generally time to gather facts and make a reasoned decision. 

The doctor who gave you your diagnosis can tell you how much time you have. It is not unusual to have at least three or four weeks after diagnosis to get treatment started.

Survivorship A to Z has a document noted in "To Learn More" about how to choose an oncologist, including how to locate potential candidates. As you will see, one of the factors to consider is the hospital he or she is affiliated with.

In addition to the standard questions, consider other aspects you may want in a doctor. For instance, some women still want an "omniscient" doctor to tell them what to do. Others prefer doctors who will discuss everything with them. And still others want a great deal of information but prefer to defer to the doctor for decision making. There is no right or wrong style. Do not feel guilty if your needs are not the same as those of your friend or neighbor. Remember, the key is what works best for you.

Interview several doctors until you find the one that is best suited to your individual needs.

If there are several doctors you like and you are having difficulty choosing among them, Survivorship A to Z provides an easy to use Evaluator in "To Learn More."

NOTES:

  • If you haven't already, this is a time to learn how to maximize your time with a doctor. Even if you are used to working with doctors, Survivorship A to Z information is likely to provide suggestions for making your limited time with a doctor more effective.
  • Look at the Survivorship A to Z article about how to get through waiting periods. In the current case, the techniques can be used while waiting for appointments to permit you to make your decision as an informed consumer.

Decide Who You Want To Make Medical Decisions.

Who makes medical decisions is up to you. It is your body and your life.  

As you decide who makes medical decisions for you care, consider the following:

  • There is no right or wrong when it comes to who makes medical decisions.
  • Medicine is a combination of science and art.. Medical decisions may not be as clear cut as you would like. There may be different medical treatments available. There may be a need to change a medical decision as facts change. There may be gray areas. 
  • There are four alternatives when it comes to who makes medical decisions. The alternatives are:
    • A doctor or other medical professional
    • You
    • A person you choose to make the decision for you (such as a spouse, parent or child)
    • A combination of all of the above
  • People who are the most active participants in their health care tend to do better. The ultimate active patient is the decision maker.
  • If you are the decision maker, it does not mean that you have to make a decision alone. In addition to your cancer doctor's opinion:
    • As noted elsewhere in this document, consider getting a second opinion.
    • Speak with family members and friends whose opinion you value. 
    • Speak with your primary care doctor. 
  • By and large, cancer doctors today understand that::
    • Their role is to present information and advice for patients - not to make all the decisions for them. 
    • It is the patient's role to make the decision, after consultation with their doctor.  

NOTE:

  • If you want someone else to make medical decisions for you, expect that the doctor will require you to sign a document allowing him or her to disclose your medical information to that person. This is because of the confidentiality requirements in the federal law known as HIPAA.
  • You can continue to have control over medical decisions even if you become unable to communicate through legal documents known together as "Advance Healthcare Directives" or simply "Advance Directives." A Living Will is the advance directive we hear about most often. This subject is discussed in the category: Planning Ahead.

Consider Available Treatments.

Which treatment will be recommended depends on the type of breast cancer you have and the stage. Treatments which are available for each type of breast cancer by stage are described in lay terms in a variety of sources on the internet. Keep in mind that, in addition to these treatments, cutting edge treatments may be available through a clinical trial. (Some clinical trials are not available if you had a specific other treatment. If you are interested in a particular trial, check the eligiblity criteria before setting another treatment.)

When you research a treatment (particularly on the Internet), always consider the reliability and source of the information as well as whether the information provider has a self interest.

Keep in mind:

  • Statistics only refer to groups of individuals historically and do not tell what will happen to you or any other individual. 
  • By its nature, research literature will always be behind the current state of treatment.
  • Any specific cases cited are usually extremes.
  • What happens to you will be unique to your specific set of circumstances. 

Even if the odds are a million to one, learn to approach your situation as if you are the one. 

Write down all questions that come up during your research so you can ask your doctor about them.

If research tends to increase your stress levels, ask a family member or friend to do it and to tell you what you need to know. Alternatively, you can hire a medical research service for a fee to do the work for you. Research services will take the details of your situation, search the literature, and prepare a report for you. For more information, see "To Learn More."

If you are pregnant, recommended treatments may be different than if you were not pregnant.

A few reputable sources for breast cancer treatment information which are kept up-to-date are:




Ask All Your Questions Before Agreeing To A Treatment Plan.

In general, treatment for breast cancer involves surgery to remove the tumor and additional therapy such as chemotherapy, anti-estrogen medications or radiation. (Treatments when accompanying surgery are known as "adjuvant therapies").

Before agreeing to a treatment plan, ask all the questions an informed medical consumer would ask, as well as any additional questions you have. 

If the doctor doesn't have time to answer all your questions during an appointment, ask when you can ask your remaining questions. For example, on what day and at what time should you call? Or, when can you see the doctor again? More and more doctors can communicate electronically with patients so ask your doctor about using e-mails.

For a suggested list of questions see the document in "To Learn More."




Lumpectomy, a Partial Mastectomy or a Mastectomy.

Surgery for breast cancer is either a Lumpectomy, a Partial Mastectomy or a Mastectomy.

Lumpectomy And Partial Mastectomy

During a lumpectomy, a surgeon preserves the breast while removing the tumor. In a typical situation,  the surgeon makes an incision, removes the cancerous tissue and then closes the opening. 

A larger tumor may require removal of a larger portion of the breast. This is known as a partial mastectomy.

A lumpectomy may result in a disfiguring dent A partial mastectomy may result in a larger dent. If a lumpectomy or partial mastectomy is coupled with plastic surgery (oncoplastic surgery), a wedge is removed and tissue under the skin is then pulled together to close the defect. That can leave the breast looking smaller, but otherwise normal. The same surgery can reduce the size of the other breast for a more normal appearance.

A lumpectomy or a partial mastectomy is generally followed by radiation therapy and sometimes by hormone therapy or chemotherapy. (Hormone and chemotherapy are known as Systemic Treatments because drugs travel through the bloodstream, thus circulating throughout the body).

If you are going to have a large lumpectomy or partial mastectomy followed by radiation and want a plastic surgeon to enhance the appearance of your breast, talk to the surgical oncologist and plastic surgeon who will do the work about the timing of the operation before the lumpectomy or partial mastectomy is scheduled. The operation generally needs to be done before radiation creates further changes in the breast.

Mastectomy

During a mastectomy, the surgeon removes the entire breast. As a general matter, mastectomies today are much less disfiguring than they used to be.

Mastectomies can be followed by a breast reconstruction.

If a mastectomy is recommended, see the Next Section.

Lumpectomy or Partial Mastectomy vs. Mastectomy

If there is a choice between a lumpectomy or partial mastectomy and a mastectomy, there are many factors to consider when deciding. For instance:

  • Future testing for the possible return of breast cancer will not be affected whether a lumpectomy, partial mastectomy, or mastectomy is performed.
  • There is no difference in the rate at which breast cancer returns (a "recurrence").
  • A lumpectomy is usually done on an outpatient basis so you go home the same day. A mastectomy usually requires hospitalization. (Typically, patients leave the day after surgery). A mastectomy with reconstruction generally requires a longer hospital stay.
  • Age does not generally matter.
  • Cosmetics should not be the deciding factor. Reconstruction is now so refined that women who have reconstructions also feel good about their appearance. If it is done at same time as the surgery, you don't even have to wake up and see one side of your body totally different from the other.
  • If you have a mastectomy and prefer not to have reconstruction, you can choose to wear a breast pad prostheses.

If you have one of the genes that increase the risk of developing breast cancer, both breasts are at risk for the future development of cancer. You also have an increased risk for ovarian cancer. A mastectomy or even bilateral mastectomy may be more advisable because of a greater risk that a new tumor will develop in either breast. However, mastectomy is not mandatory in this setting if you are willing to accept future close monitoring of the breast and ovaries by imaging techniques such as mammography and MRI. Be sure to discuss this with your doctors.

The Surgeon

Choose the surgeon (a surgical oncologist) with care. In addition to expertise and recent experience with your particular procedure, look for a doctor you are comfortable with. He or she will likely be taking care of you for a long time.

If you have selected a surgeon and then are told he cannot operate for a week or two, that is probably fine. Excellent surgeons are bound to be busy. In fact, there is a tricky point to consider: If a breast specialist can take you right away, it is legitimate to wonder whether he or she is busy enough to be the right person for you.

If A Mastectomy Is Recommended.

Take time before making a decision

You do not have to make a decision in your first meeting with your cancer doctor. Instead, take the time to make the best treatment decision for you. Your cancer doctor can tell you how much time you have to decide.

How to make a treatment decision

Whether to have a mastectomy should be based on both the best medical information you can gather and what feels right to you. When it comes to your feelings, think about what it would mean to you to lose a breast. 

Emotions can be devastating. However, research has shown that reconstruction after mastectomy, very much like breast conservation, helps a woman to achieve a more positive self-image and increased sexual satisfaction. Studies have also shown that the type of surgery performed has a surprisingly small effect on a person's overall psychological health and ultimate sexual functioning.

Don't choose a mastectomy for the wrong reason

Some women choose a mastectomy "to get rid of as much of the cancer as quickly as possible." This is not a good reason because both a mastectomy and a lumpectomy accomplish this same purpose. 

Some women choose a mastectomy thinking that they will have a better chance of survival than with a lumpectomy. Studies show that women who choose total breast removal do not live longer than women who remove only  the cancerous lump and then have radiation. There are other reasons to choose a mastectomy, but this is not one of them.

Discuss options with your doctor

 If you are interested in breast reconstruction, discuss the subject with your surgical oncologist.

  • Benefits from reconstruction may be more than cosmetic. A survey of more than 600 women post-lumpectomy found that women with pronounced breast asymmetry were far likelier to have depressive symptoms than those with less asymmetry.
  • Include timing in the discussion. Reconcstuction can start as early as having it done at the same time as a mastectomy. On the other hand, it can also be delayed. Delay may be advisable if surgery is to be followed up with radiation.

Also discuss whether the mastectomy will spare your nipple. Keeping the nipple might allow cancer to recur.(Nipples can also be reconstructed).

If you decide to have the surgery:

  • Learn how to prepare for going into the hospital.
  • Learn how to stay safe and be comfortable in the hospital. For instance, even in world class hospitals, it is helpful to have a family member or friend stay with you as much as possible to act as a patient advocate. While you're at it, Survivorship A to Z also has information on how to save money in a hospital and how to make your room feel more friendly.
  • If you are not insured, or will have to pay part of the bill yourself, the document about hospitals in "To Learn More" covers those subjects as well.

If you are going to have reconstruction:

  • Consider doing it at the same time as the breast removal. A second operation is likely to still be required to construct a nipple, but at least you won't wake up and see the breast gone.
  • Start thinking about who to use as plastic surgeon. Look for someone who is board certified with special training and experience in plastic surgery and breast reconstruction.Your breast surgeon likely has the best referral for you. It is important to your surgeon that you be satisfied with the combined results of your mastectomy and reconstruction. If the reconstruction will be at the same time as the surgery, the plastic surgeon has to be authorized to operate in the same hospital and to be available at the same time as your surgeon.

Your insurance likely covers reconstruction if it covers the mastectomy thanks to federal Women's Health and Cancer Rights Act and to the laws of many states offsite link.

To learn more about reconstruction, see the website of the American Cancer Society:www.cancer.org/docroot/CRI/content/CRI_2_6X_Breast_Reconstruction_After_Mastectomy_5.asp offsite link

NOTE: For a discussion of a mastectomy vs. a lumpectomy, see the section above.

When A Drug Is Recommended.

Keep in mind that all drugs have risks - including over-the-counter drugs. The longer a drug has been on the market, the more that is known about its effect (both good and bad.)  

Before agreeing to take any drug:
 

  • Consider the pros and cons, as well as the alternatives. 
  • Be sure your doctor has a current list of all your medications, including any over-the-counter and so-called "alternative" medications.

 

Take each drug as directed, when you are supposed to, and for as long as you are supposed to. 

Don't stop taking a drug just because you are feeling better.

For drugs that you take on a long term basis, talk to your doctor about finding out if a lesser dose will accomplish the purpose.

Learn how to safely store drugs and to dispose of unused drugs.




If Radiation Is Recommended.

Radiation is the use of high-energy rays to damage cancer cells. It is a local treatment like surgery that only affects cancer cells in the treated area.  

Cancer cells are vulnerable to radiation, because the energy disrupts cellular growth. Unlike healthy cells, cancer cells cannot repair themselves. Once they are damaged by the radiation, they will be killed off.

External beam radiation therapy is the type of radiation used with breast cancer.  Protocols vary from 3 to 6 weeks. 

If radiation is used after breast cancer surgery, it is generally delayed for about 4 weeks to permit the site to heal.

Potential side effects which occur during treatment are: fatigue, swelling, heaviness in the breast, skin redness, tenderness in the breast and (if radiation is administered to the armpit area) lymphedema (swelling of the arm.) 

To learn more about radiation, and for information on how to minimize the side effects, see the documents in To Learn More.




If Chemotherapy Is Recommended.

Chemotherapy uses to kill cancer cells with drugs. Chemotherapy is a systemic therapy which means it works throughout your system, not just in one place.

The drugs are given orally (in the form of a pill) or they are injected intravenously into a vein.

Chemotherapy may be used before or after surgery.

  • When used before surgery, chemotherapy is used to reduce a large tumor before it is removed.
  • When used after surgery, chemotherapy is used to eliminate any cancer cells that may have already moved beyond the breast to other parts of the body. Systemic therapy is meant to eliminate that risk.
  • Prior to starting chemotherapy, many medical oncologists provide patients with a chemotherapy treatment plan that summaries your cancer and the proposed treatment(s). If your doctor doesn't, ask for one. (You can see a template for such a plan on the website of ASCO - American Society of Clinical Oncologists. Click here. offsite link)

Chemotherapy requires medical expertise. It is in your interest to have chemotherapy administered by a medical oncologist who:

  • Is board-certified in medical oncology (the medical treatment of tumors, particularly malignant tumors).
  • Has extensive experience and skill in the treatment of breast cancer.
  • Is someone with whom you can comfortably relate.
  • Has an office that offers you privacy while undergoing therapy if you so choose.

Do not accept treatment from a surgeon or local doctor just because the person says he or she can do it. Expertise in the use of these techniques is essential.

If you are still able to have children, and want to do so, take steps to preserve the ability to have children before chemotherapy begins.

NOTE: More than half of women with breast cancer who undergo chemotherapy experience weight gain. This should be avoided because weight gain during therapy can diminish quality of life and may increase the risk of cancer recurrence. Therefore, breast cancer patients should avoid gaining weight, and lose weight if overweight. A combination of psychological support, nutritional counseling and exercise help to maintain or lose weight. Consider starting this healthy lifestyle before starting chemotherapy (and, of course, continuing it throughout the chemotherapy treatment.)

For more information on chemotherapy and breast cancer, including potential side effects and how to minimize them, see the document in "To Learn More."




Get A Second Opinion

It never hurts to get a second opinion before agreeing to a treatment. Breast cancer treatment is not one size fits all. In fact, there often is no one "right" answer. The key is the answer with which you are most comfortable.  

Second opinions have become so standard that doctors are not offended when patients ask for second opinions. (If a doctor objects to your getting a second opinion, it is a valid reason to change doctors).  

Insurance companies generally pay for second and even third opinions. Check with your insurer before getting the opinion so you will know how much the opinion will cost you out-of-pocket. If you have to pay, you can negotiate the fee and a payment schedule. 

  • A second opinion should come from a doctor experienced with your condition who is not in any way related to the doctor who gave you the first opinion. According to a study of breast cancer patients at the University of Michigan: Ideally, the doctor should work with a cancer center that coordinates care using a team that includes surgeons, oncologists, radiologists, pathologists and nurses. Consulting such specialists changed the original surgery recommendations for more than half of the breast cancer patients. In several cases, the team found that the original doctor failed to follow treatment guidelines and proposed overly aggressive surgery. You are likely to find such a team at a comprehensive cancer center or a large medical center, especially one affiliated with a medical school. (To locate comprehensive cancer centers, click here offsite link.
  • If you have difficulty getting the appointment with another doctor, ask your doctor's office to help.
  • If the two opinions differ, do not accept the second opinion just because it is the last one you received. Get the two doctors to talk. Perhaps they will come up with a joint recommendation. Otherwise, continue to get opinions from qualified specialists and do research until you are comfortable making a decision.
  • Do not let a search for certainty provide a reason for stalling your making a decision.

Ask your doctor to have the pathologist who prepared the original pathology report to send the pathology report and slides to a different pathologist chosen by the new doctor. The pathologist who provides a second pathology opinion will likely want to see both.

To learn more about second opinions, including how to find a specialist, see the document in "To Learn More."




Non-traditional Treatments Should Be Complementary - Not Instead Of

So called "alternative" or "complementary" treatments should only be considered in addition to medical treatments - not instead of them. There is no scientific evidence that any such treatments work on their own.

An excellent source of reliable information about each therapy and what medical evidence indicates with respect to cancer, is American Cancer Society Complete Guide To Complementary & Alternative Cancer Therapies $24.95 including shipping. (Available from www.cancer.org/docroot/PUB/PUB_0.asp or call 800.ACS.2345)

Discuss any complementary treatments you are considering with your doctor before starting them.

NOTE: Cutting edge drugs are available through clinical trials if existing treatments are not adequate. There may also be treatments in use in other medically advanced countries that may be of interest.




Learn How To Maximize Your Limited Time With A Doctor.

Learn breast cancer basics.

It helps make your limited time with a doctor faster and more precise if you understand the basics of your disease, potential treatments and side effects, and the words that are likely to be used to describe them. See the previous section of this document.
 
Learn how to communicate with your doctor on an equal footing.

If you think that you are a partner with your doctor you are less likely to feel intimidated even when he or she may be wearing a white coat towering over you while you are lying on an examining table with your butt (or breast) hanging out. A person who feels like a partner will be more likely to bring up all questions and concerns (no matter how embarrassing) and to be open to absorbing information.  

If you run into difficulties working with a doctor, there are techniques for working through them. If it ultimately doesn't work out, you can change doctors. If you take the time to choose a doctor as noted in the next section, it will make the need for a change less likely. 

Take a patient advocate with you.

It is helpful to take a trusted person (a "Patient Advocate") with you to important doctor visits to help ask questions and listen. Sometimes emotions can impair our ability to hear everything that is said. Explain to the person what you do or do not want him or her to do.

Prepare ahead of time for each appointment.

  • Write down all of your questions as you think of them. Prioritize them before the meeting. (Survivorship A to Z provides a Prioritizer that lets you keep track of your questions. A push of a button reorders the questions to your priority before the meeting. See "To Learn More.")
  • Start keeping a Symptoms Diary. (Survivorship A to Z provides an easy-to-use diary. With the push of a button, you change symptoms into an easy-to-read chart you can print and take to your appointment. See "To Learn More.")
  • Write a list of all medications to take to every medical appointment. Include over-the-counter drugs, vitamins etc. Keep the list up-to-date.  Survivorship A to Z provides a chart that allows you to store your list and print it whenever you need it..

Buy:

  • An inexpensive tape or digital recorder so you can record your sessions and replay them later. (Be sure to get the doctor's consent before recording any session).
  • A fax machine or other inexpensive mechanism which allows you to receive and send reports.

Drugs And Treatments Do Not Work In A Vacuum.

A lifestyle known as a cancer preventive lifestyle helps people gain a sense of control and empowerment. It may also help get your body into the best condition to fight cancer.

  • Eat nutritiously
  • Get exercise - it doesn't have to be in a  gym
  • Get rest and appropriate sleep.
  • Take care of your mouth. Mounting evidence indicates that poor oral care can worsen serious medical problems. This is a good time to schedule a dental check up to take care of any potential problems before treatment begins.
  • If you smoke use your diagnosis as a wake up call to quit.
  • Avoid excessive use of alcohol.
  • Try to keep a positive attitude. We're not suggesting you become a pollyanna. Work at keeping the focus on the half full side of the glass.
  • Think about getting a pet. It doesn't have to be a dog or a cat to help you feel better.

See the documents in "To Learn More" for more information.




Tools That Will Make The Process Easier

Just like we used to show up in school with necessary personal tools, this is a good time to consider the following:

Getting Organized

Putting things in order in the beginning will save you a lot of time and possibly money later on when you may not be feeling as well as you do now.

  • Create or obtain a medical binder where you can store your medical records and other health related information. (See "To Learn More.")
  • Think about the best place to store your copy of your health insurance correspondence.  (Survivorship A to Z provides information about how to get organized if needed. See "To Learn More.") 
  • While you are at it, be sure your important papers are stored in the correct place. (We tell you how in "To Learn More.")

Access to the Internet

The internet has become an important tool for both communication and obtaining information. 

  • The internet provides easy access to most doctors (more and more doctors are communicating with patients by e-mail).
  • The internet provides a means of obtaining support, both through support groups and to connect people in a similar situation one-on-one.
  • Health condition, treatment and side effect information is available on the internet. 
  • If you cannot afford to buy even a low end computer, you can rent one, or rent a computer and time as needed at an Internet Cafe. Many libraries provide free access to the internet. (Keep in mind that a lot of web sites do not have correct information, or information which is biased to the owner of the site. See Survivorship A to Z information about how to do medical research on the internet for more information. See "To Learn More.") 

If you cannot afford to buy even a low end computer, you can rent one, or rent a computer and time as needed at an Internet Cafe. Many libraries provide free access to the internet. 

Buy

  • An inexpensive tape or digital recorder so you can record your sessions with your doctor and replay them later. (Be sure to get the doctor's consent before recording any session). NOTE: Before buying, check your mobile phone. It may have recording capabilities.
  • A fax machine or other inexpensive mechanism which allows you to receive and send medical and other reports.




Take Someone With You To Doctors' Appointments

A person who accompanies a patient to doctor visits is generally referred to as a Patient Advocate.

Patient Advocates can help ask questions, help remember what the doctor said, and review the meeting with you afterward. 

Experience indicates that having someone with you is particularly important for the initial meeting with a surgical oncologist.

To learn more about patient advocates, including the qualities to look for in the person, are in the document noted in "To Learn More."

Professional patient advocates are available if you do not have a family member or friend to fill the role.




To Learn More

IF YOUR DIAGNOSIS IS OF METASTATIC BREAST CANCER OR AN UNUSUAL OR A RARE CANCER.

Get A Second opinion

It is advisable to get a second opinion about your diagnosis and proposed treatment from a National Cancer Institute (NCI) certified Comprehensive Cancer Center. You can locate an NCI center at:  https://cissecure.nci.nih.gov/factsheet/FactsheetSearch.aspx?FSType=1,2 

Once you decide on a treatment, it can be administered by your cancer doctor if you would prefer.

Free air transportation is available to special cancer centers if your treatment cannot be given locally. (See "To Learn More.").  

If you cannot travel to such a Comprehensive Cancer Center, you can have the necessary information sent by an overnight carrier or regular post. 

Consider Palliative care

If the prognosis is particularly worrisome, consider modifying the treatment goal to preserving your quality of life. A consult with a doctor who specializes in treatment of pain (a palliative-care specialist) can help. Such professionals are trained to consider the patient's entire medical and personal situation and to focus on symptom management and pain relief along with curative treatments.

Think About Cutting edge treatments

If there are no mainstream medical treatments available, find out what new treatments are being investigated in clinical trials. Clinical trials involve cutting edge medicine. 

If there are no promising treatments in the United States, research whether there are useful treatments abroad. Learn how to spot a phony treatment. (See "To Learn More.")

Home Care Is Available If Needed

  • Much of what used to be done in a hospital can now be done at home thanks to advances in medical equipment and nurses and doctors (yes, doctors) who go to your home. 
  • Medical devices can provide monitoring information to your doctors over the internet.
  • You can hire home health aides through a service or on your own. Must of the cost of home care is covered by health insurance.