Advanced (Metastatic) Breast Cancer and Recurrences

Courage is as often the outcome of despair as hope; in one case we have nothing to lose, in the other, all to gain.

— Diane DePoitiers

ADVANCED (METASTATIC) BREAST CANCER

A diagnosis of advanced breast cancer means that cancer cells have metastasized (spread) outside of the breast to other parts of the body (such as the bones or other organs) or to the lymph nodes that are not near the breast (such as those above the collarbone). If breast cancer spreads to a different part of the body, it is still regarded as breast cancer. (For example, if breast cancer spreads to the lungs, it is not lung cancer; it is still breast cancer.) Advanced or metastatic breast cancer is referred to as Stage IV breast cancer.

When breast cancer metastasizes or spreads, it usually goes to the bones, lungs and liver. Less commonly, it may also spread to the brain, spinal cord and eye.

What are some of the symptoms?
Metastatic breast cancer can be the initial diagnosis. It may also be a recurrence (return) of breast cancer following initial treatment. (Recurrence will be discussed in more detail later in this section.) Diagnosis of metastatic breast cancer is generally done using some combination of the following tests: bone scan, chest X-ray, CT scan, MRI scan or PET scan. Some symptoms of metastatic breast cancer may include:

• bone pain that does not go away;
• shortness of breath, chest pain, or cough;
• pain or discomfort under the right side of the ribcage that won’t go away;
• lack of appetite;
• unexplained weight loss;
• neurological pain or weakness and headaches;
• confusion;
• irregular gait.

These symptoms may be possible signs of metastasis to the bone, lung, liver, brain or other parts of the body. However, this does not mean that every woman who experiences them has metastatic breast cancer. There can be a variety of other reasons why you might experience the above symptoms that may have nothing to do with cancer of any kind. Short-lived aches and pains and lumps often have nothing to do with cancer, but can be a normal part of aging. If something serious is happening, it will most likely persist and get worse. The important thing is that you listen and pay attention to your body and that you see your doctor to determine the cause of the symptoms.

How is metastatic breast cancer treated?
Since every woman is different, and each situation is unique, the treatment options may vary. However, treatment of Stage IV breast cancer generally involves systemic (whole body) treatment such as chemotherapy. Other treatment options are available. They may include additional surgery, radiation, hormonal therapy or use of other drugs that may shrink the tumors and provide symptom relief.

The type of treatment you receive to fight your disease depends on your physical condition, how the disease has progressed, options available to you and your doctors, and your own choice. You can decide what is right for you.

What is inflammatory breast cancer? Is it considered advanced breast cancer?
Inflammatory breast cancer has the appearance of inflamed breasts (red and warm), and the skin of the breast looks thick and pitted. It is sometimes difficult to distinguish from benign (non-cancerous) conditions such as mastitis (a breast infection). For this reason, misdiagnosis or delayed diagnosis may occur.

Inflammatory breast cancer is a rare form of breast cancer and accounts for only one to three percent of all breast cancer cases. However, it is an aggressive breast cancer and may spread quickly to other parts of the body.
Inflammatory breast cancer is classified as Stage III breast cancer (meaning it has spread to nearby lymph nodes). If it has spread to distant organs or lymph nodes that are not near the breast, it would be classified as Stage IV. Inflammatory breast cancer usually requires aggressive treatment.

What are the chances of surviving metastatic breast cancer?
Some women have lived many years with metastatic breast cancer, with a small percentage of them in complete remission (no symptoms). Thanks to increased treatment options available, women can live for an extended period of time with advanced disease. Metastatic breast cancer can respond well to treatment. It can often be dealt with as a chronic and highly treatable illness for many years.

In the 1990s, there were significant advances in the treatment of metastatic breast cancer. New drugs such as Taxol, Taxotere, Herceptin and aromatase inhibitors were developed. Many of these therapies were first introduced in clinical trials for women with metastatic breast cancer. Currently, there are new hormonal therapies, new chemotherapy drugs, new vaccines and other treatments being developed.

Women with metastatic breast cancer may want to consider entering a clinical trial for one of the promising new drugs. Sometimes the treatments are more effective than the standard of care, and sometimes they are not. Regardless, women in clinical trials usually receive state-of-the-art care and are helping to identify new and better treatments for women with breast cancer in the future. (For more information, see Clinical Trials)

Better treatments are being developed all the time, and a cure gets closer every day. The longer you stay alive, the better your chances of living a long time, even with metastatic breast cancer.What can a woman do to help herself?

It is important for every woman—whether she has been diagnosed with advanced breast cancer or not—to be proactive with regard to her health and healthcare. To this end, you can:

• Establish and maintain healthy lifestyle habits, including good nutrition and exercise;
• Become very familiar with your own body and be aware of what is “normal” for you;
• Trust your instincts and seek medical attention when unusual changes occur;
• Be persistent in communicating your concerns to your doctors and do not give up until you are satisfied that your concerns are adequately addressed;
• Remember that you have the right to choose—your doctor as well as your treatment.

If you are not happy with your treatment, you can go somewhere else. Different medical centers offer different experimental treatments. Ask your doctors, and do some research. There may be a new treatment or clinical trial offered at a different hospital, even one out of state, that will work better for you.

RECURRENCE . . . WHEN CANCER COMES BACK

There are times when breast cancer returns (or recurs) after you have completed treatment for your initial diagnosis of breast cancer. A recurrence can happen within a relatively short period of time after treatment or many years later. The diagnosis of cancer returning can sometimes be more difficult to accept and handle than the initial diagnosis.

Although you may experience many, if not all, of the same emotions you had when you were first diagnosed, the intensity of these feelings and fears may be greater. You may be forced to face difficult choices and think about serious consequences based on your diagnosis and the choices you make.

Again, every woman is unique. How you and your family and friends choose to handle the news of a recurrence (and the options available to you) may not be the same as how anyone else handles the news. It may not even be the same as how you handled your initial diagnosis of breast cancer.

Fear of recurrence is common and normal among breast cancer survivors. However, when this fear becomes overwhelming and interferes with your normal daily life, consider talking about your feelings with a counselor or therapist or joining a support group.

What types of recurrences can happen?
There are three types of breast cancer recurrence — local, regional and distant. Recurrences usually develop from cancer cells that were there all along, but grew very slowly. Diagnosis of cancer returning does not necessarily mean that the breast cancer is advanced or metastatic. It may be able to be treated successfully.

A local recurrence happens when the breast cancer tumor cells grow back in the original site (or breast). If a lumpectomy was performed, the breast cancer cells may have grown back in the same area. If a mastectomy was performed, this may mean that the cancer cells grew back in cells close to the chest wall, skin or nearby tissue.

A regional recurrence happens when the breast cancer has spread outside the breast and underarm (axillary) lymph nodes. This could include areas such as in the chest (pectoral) muscles, lymph nodes under the breastbone and between the ribs (internal mammary), in the lymph nodes above the collarbone (supraclavicular) or in the lymph nodes surrounding the neck.

A distant recurrence (or metastasis) happens when the breast cancer spreads through the lymph system or bloodstream to other sites in the body—such as in the bone, lungs, liver, brain or other areas. This is the most serious type of recurrence.

Cancer that occurs in a separate part of the same breast that had cancer, or that occurs in the other breast, is usually a new cancer and not a recurrence.

What happens after a recurrence is found?
Once a recurrence is found, your doctor will order some of the same tests that are ordered when a metastasis is suspected. These tests would include bone scan, chest X-ray, CT scan or MRI scan. These tests are performed to find out the extent to which your breast cancer has spread.

Treatment options for a recurrence depends on a number of factors, including how you were originally treated for breast cancer, the extent of the spread of the breast cancer—whether it is local, regional or distant—and what options are available at the time. If the cancer comes back only in the breast, it often can be completely removed by a mastectomy.

Generally, treatment could include chemotherapy, radiation, hormonal therapies or additional surgery. Whatever you decide to do with regard to treatment is between you, your family and your doctors. If your breast cancer recurrence is advanced (metastatic), you may want to consider entering a clinical trial for experimental drugs or other methods of treatment.

Remember, advances in treatment are being made every day, and what may not have been available to you at the time of your original diagnosis may now be a viable option for treatment.

Ways to Cope With Metastatic Breast Cancer or Recurrence
When you are told that you have metastatic breast cancer or that your breast cancer has come back, you may experience many different feelings or emotions. Some of these may include shock, fear, sadness, anger, depression, confusion, frustration, disbelief, disappointment and a sense of losing control over your own life.

You may develop an acute sense of how quickly and drastically life can change. You may have thoughts about facing death, what you will miss in life and how your family will handle all that is about to happen. All of these feelings and reactions are normal and understandable.

You may feel as though choices have been taken away and that from the time you are diagnosed with a recurrence you are in the hands of the medical community. This is not so. While you do need to be attentive to what your doctor says about your particular situation and the medical treatment options that are available, you still have one very real and powerful area of control within your grasp — you get to choose your response to what you are facing.

The following are some ways to regain a sense of control and to cope with a diagnosis of metastatic breast cancer or a recurrence:

• Talk about your thoughts, feelings and emotions to someone with whom you feel comfortable. This can be your partner, a family member, friend, support group, professional counselor or therapist. Letting your feelings out will help those who care about you understand your needs a little better and will help you to understand what you need as well.
• Try to figure out what gives you strength to face the days ahead. Some people find comfort and strength in their spiritual life and find that their faith is strengthened through adversity. For some, prayer or meditation can give them just the boost they need to get through another day.
• Take charge of the aspects of your health that you can control, such as exercising and following a healthy diet.
• Continue to participate in as many of your regular activities as possible, including work, playing sports, doing volunteer work and visiting with friends and family. Many people have a sense of peace when they feel they are still able to live their lives as normally as possible, even when they are undergoing treatment. Remember, though, to be wise about how much you do and to conserve your strength for those things you really want to do.
• Take steps to relieve your pain and discomfort. One thing you do not have to tolerate is physical pain. You have a right to the best pain control available. Talk to your doctor or nurse about how to control your pain. Don’t wait until your pain is severe to ask for assistance. You might also consider relaxation techniques, biofeedback, imagery or other complementary therapies to help relieve any pain you are having. (See the Pain section)
• Consider joining a support group for women with metastatic breast cancer. Talking with other women in similar situations may help you to realize that you are not alone in your experience and may provide you with a support network that fits your needs. See the Support Groups in North Carolina for information about metastatic cancer support groups in your area, or try the online support groups listed in the Resources at the end of this section.
• Let others help you. We all want to feel that we can handle everything that comes our way. Asking for help is often very difficult to do. However, letting other people help you also helps them. Often, friends and family feel helpless and lost. When you let them do something for you, it gives them some small comfort that they were able to make your days a little easier. (See also Family, Partner and Caregiver Issues.)
• Keep the lines of communication open. You need to be honest with yourself and with others about your emotions and your needs. People who care about you want to know what they can do to help you through the difficult times. Let them know when you need company, when you need to be alone, when you need for them to listen to you, or even when you just need a hug.
• Consider keeping a journal about what is happening, how you are feeling and what you want to do about it. Do not feel guilty about anything that you express. Sometimes, when you put your thoughts on paper and look at them later, it helps you to gain insight into what you need to do to manage what is happening to you.
• There are many other ways in which people find comfort and strength in their journey of living with breast cancer (whether it is an initial diagnosis, metastatic breast cancer or a recurrence). If you or a loved one are facing the difficult challenge, you will learn what is best for you. There is no right or wrong way to face a breast cancer experience. Do what works for you and your family.

RESOURCES

Organizations

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer; diagnosis, treatment and many other topics. Has information on advanced breast cancer and metastatic cancer online.

Buddy Kemp Caring House (Charlotte, NC)
704.384.5223
www.novanthealth.org/buddykemp
Provides a home-like environment for emotional support away from the hospital setting. All services are free and available to anyone.

Cornucopia House Cancer Support Center (Chapel Hill, NC)
919.401.9333
www.cornucopiahouse.org
Offers education, companionship and support to help people with cancer, their family and friends. Offers support groups, including Living with Metastatic/Advanced Cancer.

Living Beyond Breast Cancer
610.645.4567 or 888.753.5222(LBBC)
www.lbbc.org
Addresses post-treatment needs of women with breast cancer through educational programs, newsletter and toll-free Survivor’s Helpline above available Tuesdays 11:00 am - 3:00 pm. Hosts online message board, “Our Corner: A Forum for Women Living With Metastatic Disease.”

National Cancer Institute’s Cancer Information Service
800.4.CANCER or 800.332.8615 (TTY)
www.cancer.gov
One of the best resources available for cancer patients, this government organization provides the toll-free hotline above in English and Spanish to answer questions of any type of cancer. Has free booklets about advanced cancer and recurrence.

Y-ME National Breast Cancer Organization
312.986.8338 or 800.221.2141
Spanish Hotline: 800.986.9505
www.y-me.org
Offers breast cancer education, support and a 24-hour toll-free hotline. Has frequently-asked questions about recurrence, and “I Still Buy Green Bananas: Living with Hope, Living with Breast Cancer” online.

Books and More

Advanced Breast Cancer: A Guide to Living With Metastatic Disease, 2nd ed., by Musa Mayer and Linda Lamb, Editor (1998). Helps women lead their lives while coping with advanced disease. Discusses treatment options, side effects and pain, support and emotional issues.

A Cancer Battle Plan: Six Strategies for Beating Cancer, from a Recovered ‘Hopeless Case’, by Anne E. Frahm with David J. Frahm (1998). Written by a survivor of metastatic breast cancer. Helps patients learn more about advanced cancer, treatment choices and more.

Cancer in Two Voices, by Sandra Butler and Barbara Rosenblum (1996). An account of the authors’ identity as Jewish lesbian women and how they live with advanced breast cancer, from diary excerpts.

The Courage Muscle: A Chicken’s Guide to Living With Breast Cancer, by Monique Doyle Spencer (2005). Uplifting, humorous account of author’s battle with advanced breast cancer.

I Still Buy Green Bananas: Living With Hope, Living With Breast Cancer, by Michelle Melin (1997). Shares advice and personal stories on coping with advanced breast cancer and living life fully. Call 800.221.2141 or see www.y-me.org.

Making Miracles Happen, by Gregory White Smith with Steve W. Naifeh (1997). Smith, a long-time cancer survivor, writes a detailed primer on how to keep searching for the right doctor and right treatment to stay alive many years after a terminal diagnosis.

The Red Devil: To Hell With Cancer—And Back, by Katherine Russell Rich (1999). A young woman’s personal account with insights about her relationships and the details of her disease’s progression to Stage IV status.

Seeing the Crab: A Memoir of Dying, by Christina Middlebrook (1998). A memoir by Middlebrook, a breast cancer patient, illustrating what goes on inside the mind of a person with terminal metastatic breast cancer.

She Came to Live Out Loud: An Inspiring Family Journey Through Illness, Loss and Grief, by Myra MacPherson (1999). Gives advice for dealing with grief, drawing on the author’s personal experience with the family and friends of a dying woman.

That’s So Funny I Forgot to Laugh, by Lauren Brower (2004). Written by a three-time breast cancer survivor living with metastases, the book shares the experience and emotional impact of metastases, and the struggle to rediscover laughter and joy.

When Breast Cancer Comes Back: Skills for Living, (video) by metastatic breast cancer survivors, Liz Nichols and Jeanne Blake. Five women tell how they meet the challenges of advanced breast cancer. Call 978.282.9970 or see www.abouthealth.com.

Web Sites

Breast Cancer Center
www.patientcenters.com/breastcancer
Resource center created especially for those with metastatic breast cancer.

Breastcancer.org
www.breastcancer.org
Site includes information and resources for advanced breast cancer and recurrence. Also has transcript from “Ask the Expert Conference on Metastatic Disease-Treatment and Quality of Life Issues.”

CLUB-METS Discussion List
www.acor.org
Click on Mailing Lists, then enter club-mets-bc in the Search box. A public online support group for people with metastatic cancer.

Community Breast Health Project
www.cbhp.org
Has a useful metastatic breast cancer section, including personal stories; click on “Support and Practical Information” on the left.

Home Care Guide for Advanced Cancer,
from the American College of Physicians
http://acponline.org/public/h_care
Information for family, friends and hospice workers caring for persons with advanced cancer at home when quality of life is the primary goal.

IBC Research Foundation
www.ibcresearch.org
IBC Research Foundation specifically targets inflam-matory breast cancer and the research data to find a cure.

IBC Support
www.ibcsupport.org
Includes information about inflammatory breast cancer, patient stories, resources and links.

MAMM: Women, Cancer and Community
www.mamm.com
Has a link to Mamm magazine’s live audiocast on Living with Advanced Breast Cancer.

The Metastatic Breast Cancer Web Site
www.bcmets.org
A source for information about metastatic cancer created by members of bcmets, an online support community. Offers information, a listserv, resources and more.

Survivor—Breast Cancer Stage IV
www.cancer-survivor.org
Founded by a Stage IV breast cancer survivor. Includes information on Stage IV (metastatic) breast cancer, survivor stories, web links, e-mail group.