Young Women and Breast Cancer

Courage is the price that life exacts for granting peace.

— Amelia Earhart

Any woman can develop breast cancer, even in her thirties, twenties and sometimes even younger. “Young,” for the purposes of breast cancer, usually refers to women under the age of 40.

What is the risk of breast cancer for young women?
The risk of breast cancer for young women is very low. According to the American Cancer Society, less than five percent of the new breast cancer cases diagnosed from 1998 - 2002 in the United States were estimated to be in women younger than 40 years of age.

Although younger women are less likely to develop breast cancer, women diagnosed at a younger age are more likely to have a mutation in a certain gene that increases their risk for breast and ovarian cancer. For women with one of these mutated genes, the estimated risk of developing breast cancer by age 70 is 14 to 87 percent, and the risk of developing ovarian cancer is 10 to 68 percent. It is difficult to say hat the exact risk of breast cancer is, and it depends on gene factors and age. See Genetic Testing and Counseling of this Directory for more information about genes and breast cancer.

Another difference of breast cancer in younger women is that it can be more aggressive than breast cancer in older women, and may be less responsive to hormone treatments. Still, the ultimate outlook is good. More than 80 percent of young women diagnosed with breast cancer survive at least five years after the diagnosis.

What special challenges do young women face?
Diagnosing breast cancer in younger women can be more difficult because their breast tissue is denser (has more gland and connective tissue and less fat tissue) than the breast tissue of older women. Mammograms are not as effective at detecting breast cancer in women with denser breast tissue. In those cases, ultrasound may be used to get another view (or in some cases, digital mammography or MRI), and biopsies may be necessary to make a definite diagnosis as to whether the lump is benign or cancerous. The vast majority of breast lumps in younger women are NOT cancerous. They are most likely due to fibrocystic breasts or they are cysts, both of which are benign (not cancer) conditions.

As a young woman, if you are concerned about a breast lump, you may need to be persistent when working with your doctors to determine whether a breast lump or other changes in the breast indicate breast cancer or a benign condition. Because breast cancer in young women is rare, physicians may pay less attention to lumps in young women’s breasts. Younger women are often told a lump is a cyst or to “wait and see” if there are any changes.

The physical experience of having breast cancer as a young woman (diagnosis, surgery, chemotherapy or radiation) is much the same as it is for any woman diagnosed with breast cancer. The treatment options chosen by you and your doctors depend on the biology, location and extent of your breast cancer and what you feel is best for you.

Young women with breast cancer have special concerns that often do not apply to older women with breast cancer. One challenge that young women with breast cancer face is that there are limited resources available to address these issues. Some of the concerns that young women may have include: preserving fertility during treatment, selecting birth control after treatment, getting pregnant after breast cancer, and raising young children. In addition, a small percentage of younger women may have received a diagnosis of breast cancer during a pregnancy.

Young women may find it difficult to find other young women who have gone through similar experiences. Check the Resources at the end of this section for groups focusing on the needs of younger women with breast cancer. Also, see Women Building Bridges (a peer support program). In the Bridges program, North Carolina women who were diagnosed with breast cancer at all ages (some in their 20s, 30s and 40s) have volunteered to talk with other women who have been diagnosed with breast cancer.

The emotional or social experience of having breast cancer as a young woman can present different challenges for you. There are a number of questions or issues that you may face on a physical and emotional level. First, why did I get breast cancer at such a young age? Is it safe, or even possible, for me to become pregnant after treatment for breast cancer? Will I be able to find a partner who will love me regardless of the scars left by breast cancer? How will the treatment affect my sexuality? Will the treatment put me in premature menopause? If I find someone I care about, how and when do I talk about (or share) what I’ve been through?How do I tell my young children that I have breast cancer?

PREGNANCY, BREAST CANCER AND FERTILITY ISSUES

During pregnancy and breastfeeding there are many changes to a woman’s breasts, including tenderness, rapid growth and increased levels of hormones responsible for milk production. This can make it more difficult to evaluate a woman’s breast for lumps. If there is a breast abnormality, finding it may be delayed because of the normal changes a woman’s breast undergoes during her pregnancy. Delayed detection may result in diagnosis of breast cancer that is more advanced.

Between the ages of 32 and 38, breast cancer is found most often in women who are pregnant or have just given birth (National Cancer Institute). However, it is important to remember that breast cancer diagnosed during pregnancy is very rare. The National Cancer Institute estimates that it occurs in one out of every 3,000 pregnancies (just .03 percent of pregnancies).

The methods for screening and evaluating breast abnormalities during pregnancy are generally the same as those used for women who are not pregnant.

However, certain adjustments are made to protect the fetus from exposure to the small amount of radiation from mammograms. Ultrasound may be used first and followed with a non-surgical biopsy, such as fine-needle aspiration biopsy. (See Making the Diagnosis.)

A diagnosis of breast cancer during pregnancy can be very frightening and stressful. However, women have successfully given birth to healthy babies after treatment for breast cancer during pregnancy. Treatment options for pregnant women depend on the stage of the disease and the age of the fetus. Consult with your doctor to determine what course of treatment is best for you in your specific situation.

For women who have had breast cancer and wonder whether it is safe or advisable for them to become
pregnant, this is a decision that should be considered carefully and in consultation with a doctor. Many doctors agree that it is fine for women free of cancer and not undergoing treatment to become pregnant. Some
doctors recommend that a woman should wait at least two years after breast cancer treatment before trying to become pregnant, to rule out a recurrence. The decision to have a baby may also be affected by the woman’s age, breast cancer characteristics and treatment.

Some women who have been treated with chemotherapy drugs for breast cancer may not be able to become pregnant. Some chemotherapy drugs can affect the function of the ovaries, causing infertility and early menopause.

If you are already the mother of young children and have breast cancer, it can be difficult to take care of your children and tell them what you are going through. See our Children’s Issues section for information and resources that can help.

The resources listed at the end of this section may help younger women find answers to complicated questions. We hope they also provide some comfort through learning that there are places to turn and others who have gone through similar experiences and have faced similar issues.

What Can Younger Women Do?

• Some breast cancer organizations suggest becoming familiar with how your breasts look and feel by performing monthly breast self-exam (BSE). The best time to do BSE is after your monthly period ends, at the same time each month. Ask your doctor about how to do BSE correctly or see the Resources at the end of this section.
• If you notice a lump or any unusual changes in your breasts, see your healthcare provider for a clinical breast exam. Remember, the vast majority of breast lumps are not cancer.
• Clinical breast exams are recommended for all women beginning at the age of 20 and every three years after that (after age 40, have them yearly).
• Mammograms are generally not recommended for women until after age 40.
• If you have a family history of breast cancer or several risk factors (See Who’s at Risk and What Can YouDo?), ask your doctor if you need to have mammograms or other screening sooner.
• If you need help paying for mammograms or treatment, see Financial and Other Assistance.
• If you have been diagnosed with breast cancer, think about seeking treatment from one of the three Comprehensive Cancer Centers in North Carolina or from another large cancer center. (See our listing of North Carolina Hospitals and Cancer Centers). A larger cancer center, especially comprehensive ones, will have more experience treating young breast cancer patients.

Portions of the above section were adapted from Facts for Life: Young Women and Breast Cancer, from the Susan G. Komen Breast Cancer Foundation, 800.I’M.AWARE or www.komen.org, and Breast Cancer and Pregnancy from the National Cancer Institute, 800.4.CANCER or www.cancer.gov.

RESOURCES

Organizations

American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Young survivors can learn about each other’s experiences and get support from the Cancer Survivors Network, 877.333.HOPE or online at www.acscsn.org.

Fertile Hope
888.994.HOPE
www.fertilehope.org
This nonprofit organization provides reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility.

Living Beyond Breast Cancer (LBBC)
610.645.4567 or 888.753.LBBC (5222)
www.lbbc.org
Addresses post-treatment needs of women with breast cancer through educational programs, newsletter, and helpline for survivors and family members. Hosts Young Survivors Group and programs focused on young women’s needs.

National Cancer Institute’s Cancer Information Service
800.4.CANCER (800.422.6237)
www.cancer.org
One of the best resources available for cancer patients, this government organization provides the toll-free hotline above in English and Spanish for questions about any type of cancer or to order free booklets. Has information on breast cancer and pregnancy.

Pregnant with Cancer Network
800.743.6724 ext. 308
http://pregnantwithcancer.org
Offers support and hope to women who are diagnosed with cancer while pregnant. Has a peer support program to connect with a woman who has had cancer while pregnant.

Resolve: National Infertility Association
888.623.0744
www.resolve.org
Provides support and information about infertility, how to select an infertility specialist and direction to resources in your area.

Sharsheret
866.474.2774 (toll-free)
www.sharsheret.org
This national non-profit organization helps young Jewish women living with breast cancer. Links young Jewish women diagnosed with breast cancer with Jewish breast cancer survivors for peer support and information. Hosts breast cancer seminars and has transcripts on caring for children and fertility issues.

Susan G. Komen Breast Cancer Foundation
972.855.1600 or 800.I’M.AWARE (462.9273)
www.komen.org
Foundation for breast cancer research, education, screening and treatment. Offers the free fact sheet, “Facts for Life: Young Women and Breast Cancer” and instructions on how to perform breast self-exam.

Y-ME National Breast Cancer Organization
312.986.8338 or 800.221.2141 (English)
800.986.9505 (Spanish)
www.y-me.org
Offers breast cancer education, support and a 24-hour hotline (English and Spanish). Sponsors a ShareRing Network for young women with breast cancer (call toll-free hotline or see web site to join).

Young Survival Coalition
212.577.6259 or 877.YSC.1011
www.youngsurvival.org
A nonprofit network of survivors to help young women with breast cancer. Has information about breast cancer
in young women, survivor stories, a newsletter, e-mail list, annual conference, and ResourceLink.

Books and More

Breast Cancer Legacy (DVD, 2004). Focuses on the role that genetics and family history plays in four young women affected by breast cancer. Companion fact sheet on hereditary breast cancer. Contact Young Survival Coalition, 877.YSC.011 or www.youngsurvival.org.

Confronting the Cow: A Young Family’s Struggle With Breast Cancer, Loss and Rebuilding, by Chris Donner (2000). Donner writes an account of his wife’s struggle with breast cancer and rebuilding his life and those of his four young children after her death.

Facing Fear: A Young Woman’s Personal Account of Surviving Breast Cancer, by Nancy Mikaelian Madey (2001). Diagnosed with breast cancer at 35, just five months after giving birth to her first child, Madey shares the struggles of her journey.

Fighting for Our Future: How Young Women Find Strength, Hope and Courage While Taking Control of Breast Cancer, by Beth Murphy (book and DVD, 2003). A companion book to the Lifetime documentary, Fighting for Our Future, which followed members of the Young Survival Coalition for two years. Includes suggestions for the newly diagnosed on treatment, establishing a support network, and handling breast cancer while pregnant.

Hope is Contagious: The Breast Cancer Treatment Survival Handbook, by Margit Esser Porter (1997). Porter was diagnosed with breast cancer at age 34. Includes advice and practical tips from women who answered a survey on coping with breast cancer treatments.

I’m Too Young to Have Breast Cancer!: Regain Control of Your Life, Career, Family, Sexuality and Faith, by Beth Hawkins (2004). Explores the emotional experience of 16 women under age 40 facing diagnosis, treatment, and life after breast cancer.

The Red Devil: To Hell With Cancer—And Back, by Katherine Russell Rich (1999). A young woman’s personal account, from insights about relationships to her disease’s progression to Stage IV status. She begins meek and fearful and becomes the kind of cancer patient she respects.

Twenty Something and Breast Cancer: Images in Healing, by Linda Phelan McCoy (1995). Captures the reality of young women coping with a diagnosis of breast cancer. Includes accounts of spiritual and physical adversities and explorations.

Victoria’s Secret Catalog Never Stops Coming: And Other Lessons I Learned from Breast Cancer, by Jennie Nash (2001). Nash, a young breast cancer survivor, shares every step of her experience with breast cancer, beginning with the first mammogram.

Why I Wore Lipstick to my Mastectomy, by Geralynn Lucas (2004). Lucas, diagnosed with breast cancer at age 27, writes a candid and funny book about her experience, including thoughts about sexuality, beauty, and having a baby after treatment ended.

You are Not Alone (video). An intimate conversation with six women diagnosed with breast cancer at a young age. Has a companion resource guide. Contact Young Survival Coalition at 877.YSC.1011 or www.youngsurvival.org.

Web Sites

Breastcancer.org
www.breastcancer.org
Includes a “Young Women and Breast Cancer” section at www.breastcancer.org/cmty_trans_2006_04.html.

Imaginis.com
www.imaginis.com/breasthealth
Site has information about breast cancer and pregnancy, breast health guidelines during pregnancy, pregnancy after breast cancer and more. Imaginis.com and She She Me also have a microsite for young women about breast health and breast cancer, Breast Health 101 for Young Women, www.imaginis.com/shesheme.

Motherisk
www.motherisk.org
A research group providing evidence-based information about the safety or risk of drugs, chemicals and disease during pregnancy and lactation. Includes a section on breast cancer in pregnancy.

Myself: Together Again (M:TA)(Raleigh, NC)
www.myselftogetheragain.org
Designed to be a visual guide for younger women who want to see how their bodies will transform before, during and after mastectomy and reconstructive procedures. For a booklet, contact info@myselftogetheragain.org. (2006 Komen NC Triangle Grantee)

Nordie’s at Noon
www.nordiesatnoon.com
Shares the personal stories of four women diagnosed with breast cancer at age 30 or younger. Book by the same name available through web site. Encourages women to be proactive about their health.