Survivorship


Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved.

— Helen Keller

There is much written about diagnosis and treatment of breast cancer. However, what happens to a cancer survivor goes far beyond that moment of relief when treatment is finally over. For some, the treatment is continuous, so even that milestone does not come. Life goes on.

According to the National Cancer Institute (NCI), more people are surviving cancer than ever before. The NCI estimates that there are now two million breast cancer survivors in the United States today. While survivorship is the goal of treatment, reaching and living it does not mean life becomes less complicated.

When do I become a breast cancer survivor?
The short answer, immediately. From the very instant you receive your diagnosis of breast cancer until you take the very last breath of life, you are a survivor. It doesn’t matter if you are still in treatment, don’t have all your hair back or at what point anyone else starts their count.

There may be times when you don’t feel like a survivor—times when you wonder “why me?” or “why now?” You may even ask, “where’s God in all of this?” You may never know the answers to those questions. In fact, some people respond to that way of thinking by asking, “why NOT me?” and “why NOT now?” Who ever heard of a good time to be diagnosed with breast cancer? Dealing with these questions and your feelings is part of the healing process. It doesn’t happen in an instant, and sometimes it takes a long time to come to a place of acceptance. No matter how long the healing and acceptance takes, you are and will remain a survivor.

What kinds of changes will I face as a breast cancer survivor?
There are physical changes. Breast surgery (including reconstruction) changes the appearance of your body. Sometimes these changes are minimal, other times more dramatic. Either way, your body holds reminders of your experience with breast cancer in the surgical scars. Physical problems can happen because of the cancer itself or from the treatments. Surgery, chemotherapy and radiation are strong treatments and can have physical effects months or even years after treatment. For example, radiation therapy can damage surrounding tissue, and chemotherapy can be toxic to the heart and other organs.

There can be changes in sexuality, loss of desire, premature menopause, infertility and more. There are other physical problems that arise as a result of treatment, such as persistent fatigue and pain. You may have some of these symptoms or none of them.

There may be changes in your quality of life that need to be addressed and accepted. For example, you may require medications that affect how you feel physically and emotionally, and you may not be able to do everything that you once were able to do. Your memory may not serve you as well as it did before chemotherapy. Some refer to this as “chemo-brain,” and it may be a temporary condition that resolves after chemotherapy.

You may have questions about what doctor to see if you are not feeling well, have an ache or pain for which the origin is unclear. Many survivors make positive lifestyle changes, such as eating healthier, exercising, reducing stress.

Your emotional “balance” or “compass” may change as a result of how you are able to deal with having breast cancer. You may discover that you are more sensitive and have your feelings hurt easier. You may become stronger emotionally and not let things bother you as they may have in the past. The process of dealing with a diagnosis and treatment for any cancer is stressful for everyone.

Sometimes coping with cancer can trigger depression, post-traumatic stress disorder, and a fear of recurrence. Or, you may come out of the cancer experience stronger than ever before.

Some of your relationships with loved ones, friends and others may also change. These changes can occur in you for any number of reasons, such as changed body image, fear of intimacy, not wanting to be a burden and not knowing how to deal with the pressures that accompany the reality of being a cancer patient and survivor. Your relationships don’t always change at the same pace as you do. Your personal relationships may evolve and grow stronger, or they may get “stuck” and eventually end. Feeling comfortable with yourself, wherever you are in the cancer journey, will help you to enjoy the relationships you share.

There may be financial hardships that linger. Cancer treatment is expensive, even with health insurance. Medical bills do not disappear the day you are finished with treatment. Sometimes it can take years to pay for medical expenses, leaving cancer survivors deep in debt. Some people worry about losing their jobs or being discriminated against because they have had cancer. This can increase stress and anxiety and interfere with daily living.

You may be more prone to second cancers. People who have survived one cancer have almost twice the risk of developing a second cancer as the general population has of developing cancer. This could be due to whatever reasons caused the first cancer, or it could be a result of chemotherapy and radiation treatments.

Making the transition from being a patient on active treatment to long-term follow-up and survivorship can be difficult for some cancer survivors, especially if they are having trouble coping with the physical, emotional and financial challenges. As survivors, we may want life to return to what it was like before, “back to normal.” The fact is that our lives have changed forever, and we need to discover a new “normal.”

Many cancer survivors talk about how their experience with cancer has given them “new life,” a different set of priorities, the motivation to do something they’ve always wanted to do (travel, climb mountains, skydive, paint, spend time writing, enjoying family time). We encourage you to persevere. As best you can, try to find a way to turn the difficult experience into something that brings about a positive change.

How do I deal with fear of recurrence?
Wondering whether your breast cancer will return is normal. Over time you can find ways to cope with the fear. Talking to other survivors, family and friends, counselors, or health professionals in a supportive environment can be helpful. Being part of a support group may be helpful as well. Seeking individual and spiritual counseling is another way that people deal with these feelings.

Sometimes reading “survivor stories” can be inspiring, comforting and encouraging. Relaxation techniques and imagery can help to ease negative thoughts or feelings. Reaching out to others through participation in volunteer activities may also be a way for a survivor to feel stronger and more in control. If you find your fear overwhelms you and affects your daily activities, you may want to seek professional help.

Is it difficult for breast cancer survivors to obtain health insurance?
An issue that can come as a surprise is the enormous challenge some cancer survivors have in securing health insurance. Even after you reach the significant milestone of being cancer-free for five years, you may find yourself in a fight for coverage. Many breast cancer survivors are not eligible for individual health insurance coverage, or are unable to find coverage that is affordable.

Your best chance of obtaining affordable health insurance is through an employer that offers group health insurance as a benefit, or through a spouse’s coverage. See Insurance Issues on page 140 for more information and suggestions on how breast cancer survivors can obtain health insurance.

Which doctor do I call when I have questions about my health?
Good question. There are some people who do not have a “regular doctor.” You will need to decide which doctor will provide your cancer follow-up care and which one(s) will provide other medical care. For follow-up breast cancer care, this may be the same doctor who provided your cancer treatment. For other medical care, you can continue to see your family doctor or medical specialist as needed. If you don’t have a family doctor, your oncologist may be able to provide you with a referral, or ask people in your community for a recommendation.
Depending on where you live, it may make more sense to get cancer follow-up care from your family doctor than to travel long distances to see an oncologist. No matter who you choose as your doctor, try to find those with whom you feel comfortable. Make sure any doctors you see have updated copies of your medical records.

How often should I be seen for follow-up care?
Follow-up care will be different for each breast cancer survivor based on the type of breast cancer, the type of treatment, and the person’s general health. The American Society of Clinical Oncology (ASCO) offers the following guidelines for follow-up care:

  • A medical history (including discussing possible symptoms) and physical exam every 3-6 months for the first three years;
  • A medical history and physical exam every 6-12 months during the next two years;
  • A medical history, physical exam, mammogram, clinical breast exam and pelvic exam (including Pap smear) every year after the first five years. After lumpectomy, the first mammogram should be six months after the end of radiation therapy.

Some doctors will order more tests (such as blood tests, tumor marker tests, bone scans, ultrasound, chest X-ray or CT scans) than others at each follow-up visit. You should decide with your doctor which follow-up plan you prefer. Some women and their doctors prefer an aggressive plan (more tests) after initial treatment in order to feel more in control. This may change later as the inconvenience, expense and anxiety start to outweigh the possible benefit (or not). In addition, check with your health insurance plan to see what kind of follow-up is covered, for how long, and if there are any restrictions on which doctor(s) you can see.

In terms of scientific evidence, there is no difference in overall survival between aggressive (more tests) and more moderate follow-up screening programs. Also, studies show that overall survival is not affected by when a recurrence is detected, but this could change as new treatments are developed.

Questions To Ask Your Doctor About Follow-up Care

  • How often should I see the doctor for a routine visit?
  • What follow-up tests, if any, should be done?
  • How often should these tests be done?
  • What symptoms should I watch for?
  • If I develop any of these symptons, who should I call?

Adapted from Follow-Up Care: Questions and Answers, from the National Cancer Institute, 800.4.CANCER or http://www.cancer.org.

How can I get involved and be active in breast cancer issues?
There are many ways to be involved and active in supporting breast cancer issues. Often, a good place to start is in your own community. Getting involved in a support group allows you to meet others who have also had breast cancer (or are currently being treated). Meeting and sharing with others will give you opportunities to learn about what is being done to support breast cancer locally. You can participate in local events such as health fairs, talk to groups about your breast cancer experience, volunteer for fundraising events that support breast cancer programs or research.

There are also statewide and national organizations that provide many different ways for you to become an advocate for breast cancer. For more information on how to get involved in North Carolina and nationally, see Breast Cancer Advocacy.

What if I don’t want to get involved or be active in breast cancer issues?
This is entirely normal, too. Some people find that breast cancer leads to a desire to get more involved in other issues important in their lives, but not always breast cancer issues. Other people find it easier to walk away from the whole experience and try to forget that it ever happened. Other people find that they can’t do enough to fight the disease (or fight back from what it does to people’s lives), so they find ways to get involved. Some volunteer in their community, others participate on the national level. What is important is that you do what is best and feels right for you.

I’m just one person. How can I make a difference?
You’d be amazed at what “just one person” can do. For example, Nancy Brinker, a breast cancer survivor herself, founded the Susan G. Komen Breast Cancer Foundation in honor of a promise she made to her sister, who lost her life to breast cancer. It only takes one person to make a difference in someone else’s life. When all the “just one persons” come together, the impact is mighty and powerful. The impact of your words of comfort, your life itself, often serves as an inspiration point for others. You may not ever realize it, but you make a difference just by being who you are.

You can wear pink ribbons, participate in survivorship events in your community, and talk to someone going through breast cancer treatment. Volunteer for a peer support program, such as Women Building Bridges, Reach to Recovery or others. There are other ways you can volunteer and reach out to help others. The benefits of giving of your time and talents to another person or organization can return a thousand-fold— whether you spend five minutes talking with someone, two hours volunteering to work a booth at a fundraising event or twenty years fighting for a cause.

Share your story and your time as much as you feel comfortable and able to do. Just as you may have been encouraged and inspired by the experiences of other survivors, you have the opportunity to do the same for others who are at the beginning of the journey. You can help, and you can make a difference.

Words Of Advice
Sometimes, women (and men) tend to take caregiving, tending to others’ needs, and volunteering further than one person can physically or emotionally handle — to the point of exhaustion or burnout.

Find a comfortable balance between living your own life and doing for others.

We encourage you to take inventory of what matters most to you.
Recognizing that life is precious and fragile is part of the awakening you may experience when faced with a serious and life-threatening disease. We aren’t born with guarantees that our lives will always be perfect or challenge-free. It’s often the trials and challenges that help us grow and become the person we are.

No one wishes for or anticipates breast cancer. Many of us go about our daily living without giving it a second thought—until it happens to us or to someone we care about. What’s good is that you have a chance to make the changes necessary to live the life you want to live, to do the things you’ve always wanted to do. You can choose to do whatever is best for your life.

Cancer survivorship brings a new appreciation for life and all that each moment holds. It isn’t always easy or simple, but you can survive and thrive.

RESOURCES

Organizations

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
http://www.cancer.org

ACS offers a Cancer Survivor’s Network by phone or online, 24 hours/day. Call 877.333.HOPE for talk shows and survivor stories or see the web site.

Cancervive
800.4.TO.CURE
http://www.cancervive.org

Provides support, public education and advocacy to assist survivors to reclaim their lives after cancer. Site has resources, survivor stories and more for survivors, family and healthcare professionals.

Lance Armstrong Foundation
512.236.8820 or 866.235.7205
http://www.laf.org

LAF’s mission is to enhance the quality of life for those living with, through and beyond cancer. Web site includes survivorship facts, stories, caregiver resources, and information on long-term survivorship.

Living Beyond Breast Cancer
610.645.4567 or Survivors Helpline at 888.753.5222
http://www.lbbc.org

Empowers women with breast cancer to live as long as possible with the best quality of life. Offers programs, resources, conferences, newsletter, Young Survivors network and interactive message boards. Survivor’s Helpline is staffed by breast cancer survivor volunteers.

National Cancer Institute’s Cancer Information Service
800.4.CANCER (800.422.6237)
http://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. Has free booklets about follow-up care and life after cancer treatment.

National Cancer Survivors Day Foundation
615.794.3006
http://www.ncsdf.org

Promotes America’s nationwide, annual celebration of life for cancer survivors, their families, friends and oncology teams (first Sunday in June).

National Coalition for Cancer Survivorship
877.NCCS.YES (877.622.7937)
http://www.canceradvocacy.org

Provides free booklet “What Cancer Survivors Need to Know About Health Insurance,” and audiotape program, “The Cancer Survivor’s Toolbox,” that focuses on key cancer survival skills for survivors, family members and caregivers. Call 877.TOOLS.4.U or see web site.

Office of Cancer Survivorship at National Cancer Institute
301.402.2964
http://dccps.nci.nih.gov/ocs

This office conducts and oversees cancer survivorship research. Call or see the web site for a list of current research projects in cancer survivorship.

SHARE: Self-help for Women with Breast or Ovarian Cancer
212.719.0364 or 866.891.2392
http://www.sharecancersupport.org

Survivor-led organization has mission to ensure that no one faces breast or ovarian cancer alone. Offers support from diagnosis through treatment and beyond.

Susan G. Komen Breast Cancer Foundation
800.I’M.AWARE (800.462.9273)
http://www.komen.org

Provides information on breast cancer as well as survivors’ stories (http://www.komen.org/survivor). Four affiliates in North Carolina (Komen NC Triangle, Komen North Carolina Triad, Komen NC Foothills and Komen Charlotte) host annual Race for the Cure and other events.

Women’s Information Network Against Breast Cancer
626.332.2255
http://www.winabc.org

Mission is to increase public awareness about breast cancer and the resources available to women. Has information on breast health, breast cancer, peer support and referral services, and healthcare options.

Y-ME National Breast Cancer Coalition
800.221.2141
http://www.y-me.org

Provides breast cancer information and support to women with breast cancer, their loved ones and caregivers. Also publishes bi-monthly Hotline Newsletter.

Young Survival Coalition
212.577.6529
http://www.youngsurvival.org

Focuses on the issues and challenges faced by women age 40 and younger who are diagnosed with breast cancer.

Books and More

After Breast Cancer: A Common-Sense Guide to Life After Treatment, by Hester Hill Schnipper (2003). Schnipper, a breast cancer survivor and an oncology social worker, helps prepare women for life after breast cancer with information covering all aspects of the experience.

Art.Rage.Us: Art and Writing by Women with Breast Cancer, Intro by Jill Eikenberry (1998). Celebrates the essence of women with breast cancer. Powerful and moving. View sample online and order at http://www.breastcancerfund.org.

The Breast Cancer Book of Strength and Courage: Inspiring Stories to See You Through Your Journey, by Judie Fertig Panneton, Ed. (2002). Forty-six women share their stories about cancer, addressing depression, looking back on facing cancer.

Breast Cancer Journal: A Century of Petals, by Juliet Wittman (1994). Written by a journalist about her diagnosis, treatment and her relationship with her husband and 10-year old daughter.

Breast Cancer? Let Me Check My Schedule! by JoAnn Loren, Ed., (2000). Addresses difficulties encountered by women in maintaining their professional lives and meeting their personal goals while coping with breast cancer.

Can You Come Here Where I Am? The Poetry and Prose of Seven Breast Cancer Survivors, by Rita Busch, Ed., Helen Rash, Katherine H. Traynham, Judy T. Klevins (1998). Demonstrates the healing power of words from a breast cancer support group who express their feelings as they face diagnosis, treatment and recovery.

Cancer Has Its Privileges: Stories of Hope and Laughter, by Christine Clifford (2002). Author shares a collection of stories and anecdotes from her fellow survivors that go from funny to moving.

A Cancer Survivor’s Almanac: Charting Your Journey, edited by Barbara Hoffman, JD (1998). Reference volume from the National Coalition for Cancer Survivorship has information about health insurance, disability, employment rights, legal, financial and survivorship issues. Call 877.NCCS.YES or http://www.canceradvocacy.org.

Coping with Cancer. Bi-monthly magazine for anyone affected by cancer. Includes survivor stories, support and nutrition as well as news briefs, financial and treatment issues and resources. May find free copies in clinics. Call 615.790.2400.

Finding the “Can” in Cancer, by Nancy Emerson, Pam Leight, Susan Moonan and Terri Schinazi (2005). Four long-term survivors combine personal stories and experiences with practical tips for coping with side effects, information on tests and procedures, emotional and spiritual encouragement, and advice on how to let others help during this difficult time. See http://www.findingthecanincancer.com.

First, You Cry, by Betty Rollin (2000). Rollin, an NBC News correspondent discusses her struggle with breast cancer in the 1970s—coping with the news, undergoing a mastectomy, and recovering her emotional health.

Ice Bound: A Doctor’s Incredible Battle for Survival at the South Pole, by Jerri Nielson and Mary Anne Vollers (2001). Tells the story of a doctor who was diagnosed with breast cancer during her stay in the Antarctic.

I’m Alive and the Doctor’s Dead: Surviving Cancer With Your Sense of Humor and Your Sexuality Intact, by Susan Buchanan (1998). A book for any woman facing a medical verdict she does not want to hear. Assures women that there is life—and lots of it—during and after cancer.

Living Beyond Breast Cancer: A Survivor’s Guide for When Treatment Ends and the Rest of Your Life Begins, by Marisa C. Weiss, MD, and Ellen Weiss (1998). Focuses on the physical, emotional, social, legal and financial issues women face after being diagnosed with breast cancer. Call 610.645.4567 or see http://www.lbbc.org.

MAMM: Women, Cancer and Community. This magazine includes informative and well-written articles that address many issues of breast cancer and women’s health. Includes survivor stories, medical updates, research findings, resources and much more. See http://www.mamm.com for more information.

Not Now . . . I’m Having a No Hair Day: Humor and Healing for People With Cancer, by Christine Clifford (1996). Using her own experience with breast cancer, the author shows how the power of laughter and positive thinking promote recovery and growth. Call the Cancer Club at 800.586.9062 or online at http://www.cancerclub.com.

Picasso’s Woman: A Breast Cancer Story, by Rosalind MacPhee, Kathy LaTour and Deborah Baker (Ed.)(1996). A personal memoir of MacPhee’s battle with breast cancer told as a survival “adventure” by the poet, medic and hiker. Reveals much about self-image and the difficulties of coming to terms with an altered body.

Portraits of Hope: Conquering Breast Cancer: 52 Inspirational Stories of Strength, by Marcia Stevens Sherrill and Nora Feller (1998). Includes passages from both male and female breast cancer survivors, from social workers, teachers, activists and artists to celebrities including Julia Child, Linda Ellerbee and Betty Ford.

Straight From the Heart: Letters of Hope and Inspiration from Survivors of Breast Cancer, by Ina L. Yalof (1996). Containing nearly 100 actual letters from breast cancer survivors, this work is a gift of life from women who have rediscovered their own lives.

Thanks for the Mammogram: Fighting Cancer with Faith, Hope and a Healthy Dose of Laughter, by Laura J. Walker (2000). Encouragement through humor with doses of hope, courage and faith.

A Tribe of Warrior Women: 30 Courageous Breast Cancer Survivors, by Melissa Springer, with Marcia Ann Gillespie (2003). Photographs and personal vignettes of breast cancer survivors, captured by photo-journalist Melissa Springer.

Web Sites

Association of Cancer Online Resources
http://www.acor.org
Has online discussion and support groups for people with cancer. Includes several breast cancer-related groups and a long-term survivors’s discussion list (“LT-SURVIVORS”).

Breast Cancer Answers
http://www.canceranswers.org
Contains art gallery, personal stories from breast cancer survivors and links to information, support, treatment and ways to improve quality of life.

Breast Cancer Support
http://bcsupport.org
Online support for breast cancer survivors.

BreastCancer.org
http://www.breastcancer.org
Provides research updates and information from breast cancer experts on a broad range of breast cancer topics. Holds regular chats with oncologists on different topics.

Camp Nukemboobie
http://brassmom.hypermart.net/index.htm
Humorous web site by breast cancer survivors.
Recommended only for those who are ready to laugh through, and at, the cancer experience. Irreverent and a little off-color.

Cancer Survivors Network
http://www.acscsn.org
A section of the American Cancer Society’s web site created specifically for cancer survivors. Has stories and personal experiences, chatrooms, discussion forums, and lists of resources.

Cancer Survivors On-Line
http://www.cancersurvivors.org
Many links to resources for cancer survivors.

Chemoheads
http://www.chemoheads.com
Hosted by Joni Rodgers, lymphoma survivor and author of Bald in the Land of Big Hair, this site gives encouragement and information links.

Imaginis
http://www.imaginis.com
Easy to navigate with information on a variety of breast health and breast cancer topics. List of links to resource organizations and an e-newsletter.

Living With It
http://www.livingwithit.org
This Aventis Pharmaceuticals site provides basic cancer information as well as tips on diet, exercise, lifestyle and money matters. Also in Spanish.

Shared Experience
http://www.sharedexperience.org
Learn about others’ experiences with cancer and share your own.