Frequently Asked Questions

Because young women represent a smaller percentage of women living with breast cancer, they’ve often been overlooked in research exploring new treatments, screening methods and more.

An increasing number of young women, and the healthcare professionals who treat them, are voicing the need for clinical trials specific to the cancer profiles and concerns of young women. These sources will help you find studies that are seeking participants. Those recruiting premenopausal women are especially focused on younger women (others may be looking for women in a wider age range):

• The Young Survival Coalition’s Current Studies section lists ongoing research projects specific to young women affected by breast cancer.
• LBBC’s Clinical Trials Resource Center, in partnership with CenterWatch.com, contains listings of both industry-sponsored and government-funded clinical research studies on breast cancer as well as profiles of research centers, what it means to be in a clinical trial and recent drug trial results.
• The National Cancer Institute clinical trials database lets you search in your area or beyond by cancer type, stage and scope of research.

Reviewed by Clifford A. Hudis, MD

Women who are under 40 sometimes receive more aggressive surgery because their breast cancer may be more difficult to treat. However, research now shows that younger women with stage I or stage II disease who choose lumpectomy instead of mastectomy under the advice of their physicians have about the same risk of recurrence as older patients also treated by lumpectomy. The surgery must be followed by radiation.

You and your surgeon should talk fully and openly about your options. Seeking a second opinion often helps with treatment decision-making.

Reviewed by Clifford A. Hudis, MD

Tamoxifen (brand name: Nolvadex) is a hormonal treatment that works by blocking estrogen receptors on breast cancer cells that grow when estrogen is present. This helps lower the risk of developing hormone-sensitive breast cancers.

When tamoxifen was first used, research measured only its benefits for postmenopausal women with hormone-sensitive breast cancers. In more recent years, studies have shown it to be effective in younger, premenopausal women with lymph-node positive, estrogen-receptor positive (ER+) disease. When those women take tamoxifen for five years after surgery and chemotherapy, they increase the amount of time they remain disease-free.

You should not become pregnant while taking tamoxifen because it can damage the developing fetus.

Find out more about tamoxifen and other hormonal treatments by listening to the podcast of our 2009 fall conference workshop: Hormonal Therapies: Before, During and After Breast Cancer.

Reviewed by Clifford A. Hudis, MD

About 15 percent of all breast cancers are known as "triple negative," meaning that they don’t test positive for the expression of estrogen or progesterone receptors or the HER2 receptor. Younger women are more likely to have triple-negative breast cancer than older women.

While it’s true that hormonal therapies (which block estrogen or progesterone) and targeted therapies (which attack specific cancer cells) aren’t effective against triple-negative breast cancer, it’s also true that chemotherapy works especially well against triple-negative disease. Ongoing research projects are looking at whether specific chemotherapies, alone or in combination, might increase that effectiveness even more.

In addition, studies are looking at anti-angiogenesis drugs that prevent the growth of new blood vessels, as well as many new targeted therapies, as possible treatments for triple-negative breast cancers.

Reviewed by Clifford A. Hudis, MD

There are lots of physical and emotional reasons why your sexual functioning might decrease during and after breast cancer treatment. As estrogen levels fall, the vagina dries and loses elasticity. This makes sex uncomfortable and even painful. Surgery can leave numbness or take away an area of sensation and pleasure. Chemotherapy may bring on nausea and exhaustion.

Some women experience depression related to their diagnosis, treatment or ongoing worries, or feel less sexually desirable due to their changed bodies. Depression lowers sexual desire, as do many antidepressant medications. What’s more, the longer you go without having sex, the more difficult it may be to start again.

The best way to regain your spark and feel comfortable with sex again is to go slowly. During quiet moments, talk with your partner about your interest in restoring your sex life and decide upon a few "first steps" toward that goal. Then spend romantic time together, with physical touching but not intercourse. Support the return of sexual desire by building on a series of encounters, from sitting on the couch holding each other to exchanging massages or taking a walk together.

When you’re ready for sex, you might use lubricants, creams and dilators to increase comfort, such as Replens, Astroglide or K-Y Jelly. Many women find that sex toys and other sexual aids rev things up as well—even if these were not part of their sexual activity before treatment.

Discover more suggestions for regaining your sex life by reading the article Getting Your Groove Back: Sexuality and Intimacy After Breast Cancer in the summer 2008 issue of Insight.

Reviewed by Clifford A. Hudis, MD

Chemotherapy and some other treatments reduce or block estrogen production by shutting down ovarian function. This triggers early, or premature, menopause—which can be temporary or permanent. Women under age 40 are more likely to have temporary early menopause. Surgically removing the ovaries of a premenopausal woman creates permanent premature menopause.

If you were having regular periods prior to your breast cancer diagnosis, treatment-induced menopause can feel like hitting a brick wall. You may suddenly be contending with hot flashes, night sweats, sleep disruption, vaginal dryness, lower libido, changes in mood and more. Even though tamoxifen doesn’t cause premature menopause, it does create some of the same symptoms.

If you have estrogen-receptor positive breast cancer, early menopause can help you by lowering the amount of estrogen circulating through your body. However, it also escalates bone loss, which can become serious if early menopause is permanent.

Certain medications can help reduce hot flashes and night sweats. Avoid hot-flash triggers such as alcohol, caffeine, smoking and warm temperatures (indoors or outside).

Reviewed by Clifford A. Hudis, MD

Genetic testing isn’t just about the risk to your children. It also concerns your future cancer risks. Yet a 2005 survey of more than 1,200 young women with breast cancer found that less than half had discussed genetic testing with their doctors.

Although there may be no history of breast cancer in your family, by being a young woman affected by breast cancer, you may be at higher risk of having a gene mutation than an older woman. Because of that, some oncologists offer genetic testing to any woman under 40 (or even older) who’s been diagnosed with breast cancer.

If you carry one of the mutated BRCA genes, you also have an increased chance of developing a second breast cancer or ovarian cancer. That’s why many clinicians recommend, starting at age 25, that women with either BRCA mutation have alternating mammograms and breast MRIs, every six months.

BRCA 1 and BRCA 2 mutations may be inherited from either your mother or your father’s side of the family. Men with an abnormal BRCA gene have an increased risk of breast cancer, which can be passed to their daughters. Families with BRCA1 or BRCA2 mutations also show greater risk for cancers of the pancreas, larynx and prostate.

Meet with a genetic counselor first before deciding whether or not to have genetic testing, and get an understanding of the different tests that can be ordered and the possible results. Not all results are straightforward, and it is important to have someone on your healthcare team with formal training in genetics to ensure the proper interpretation is made and the appropriate test is ordered.

If you are tested and don’t have a genetic mutation in BRCA1 or BRCA2, but you have a strong family history, you may still have an inherited risk. Not all genetic risk for breast cancer is currently detectable. Your test results will help tailor risk reduction strategies. Talk with your genetic counselor or healthcare provider about what a negative test result may mean for you.

For more information on breast cancer and genetics, visit our Web site community for women at high risk.

Reviewed by Jill Stopfer, MS

Having either mutation gives you a 60 to 80 percent greater risk of breast cancer, diagnosed at a younger age—on average, at 42. Women who do not have breast cancer but who carry the BRCA1 gene abnormality have a higher risk of eventually developing the disease than do women with BRCA2. In addition, both of these genetic mutations also increase the possibility of future ovarian cancer—with a higher risk among BRCA1 carriers.

For more information on breast cancer and genetics, visit our Web site community for women at high risk.

Reviewed by Jill Stopfer, MS

You’re right to wait until after treatment to get pregnant. You should not try to become pregnant while on chemotherapy or taking tamoxifen or any other hormonal medication. These drugs can seriously harm embryos and fetuses. Use barrier birth control (without hormones) while on tamoxifen.

Stopping tamoxifen means that you will stop benefiting from its ability to fight breast cancer. We know that women who take tamoxifen for five years do better than those who take it for only two or three years.

A regimen consisting of five years of continuous tamoxifen therapy has been tested and shown to be effective. Other plans are of unknown value. Do not stop taking tamoxifen without first consulting with your doctor or healthcare provider.

Reviewed by Clifford A. Hudis, MD

Depending upon the type of chemotherapy you receive, you have a better chance of ovulating again after treatment if you’re under age 35. Women older than 40 are more at risk of losing ovarian function permanently. If your periods haven’t returned after a year, there’s only about a 10 percent chance that they will.

If your periods do return, you may be less fertile than you were before treatment. Chemotherapy can harm the eggs in your ovaries and reduce their number. This may make it difficult for you to become pregnant even if you’re menstruating regularly.

These resources may help:

• To connect with other young women affected by breast cancer who are concerned about fertility issues, visit the Fertility & Pregnancy After Breast Cancer bulletin board of the Young Survival Coalition.
• You’ll find more information on cancer and fertility, including questions to ask your doctor, at fertileHOPE.

Reviewed by Clifford A. Hudis, MD

Yes—adoption is another road to parenthood for women who have been treated for breast cancer. Both domestic (within your home country) and international adoptions are possible. Some agencies and foreign countries may be more accepting of your medical history than others.

Explore your options by researching online and in books. Attend a local adoption conference, if possible. Talk with other women who adopted after breast cancer. Learn what medical and personal information will be helpful for you to gather. Choose a home study agency and adoption agency or attorney carefully. It’s worth interviewing several to find ones that are experienced in helping prospective adoptive parents who have had cancer.

• Learn more about adopting after treatment. Adoption: Challenges and Solutions After Breast Cancer, in our Insight newsletter, provides an overview of the adoption process and stories of three women affected by breast cancer who later adopted.

Reviewed by Clifford A. Hudis, MD

Think about your social life before cancer. Were your first dates filled with weighty personal disclosures? More likely, you spent the time enjoying a movie or meal and deciding whether the person was someone you wanted to see again.

Your cancer experience is an important thing to share with someone you’re dating, but only after you’ve developed a level of comfort with that person. There’s no reason to explain your situation to dates you may have no interest in seeing again. Even if you are interested, finding the right time takes a bit of balance. If you talk about cancer right away, that can become the only thing the person thinks of about you. If you wait until a bond has been formed between the two of you—and then tell—the other person may feel shut out from your real life and feelings.

Have the conversation when you both are relaxed and there’s plenty of time. You don’t have to discuss your fertility prospects until (and if) the relationship develops further. You may want to talk about your breast cancer sooner if you’re still in treatment or if you’re ready for sexual activity but want to feel assured that your new partner will accept your changed body. (But don’t wait until you’re headed into the bedroom for your first sexual encounter together!)

Some women begin new relationships online and chat for several days, weeks or longer before meeting face-to-face with the person for a date. If you develop a sufficient level of comfort from an online interaction, you may decide to discuss your cancer experience in electronic communications before the first date even happens.

• For more help, read or listen to Single and Ready to Mingle: Dating after Breast Cancer, the transcript and podcast of a workshop from the 8th Annual Conference for Young Women Affected by Breast Cancer, sponsored by LBBC and the Young Survival Coalition.

Reviewed by Clifford A. Hudis, MD

Even very young children will know that something is wrong, just from the behavior of the adults around them. If treatment changes your appearance, energy level or appetite—any of which is likely at least for some time—children will become even more worried. When they don’t have information, they may fill in the blanks with something far worse than what is going on. It’s also important for them to know that they did nothing to cause your cancer.

Talk with kids in language that’s age-appropriate—very simple for toddlers and pre-schoolers, a bit more factual for elementary-age children, more detail for adolescents and teens. Reassure them that you are getting the best treatment and that they will be cared for even when you might be sick. In day-to-day conversation, gently explore what their concerns may be. Don’t jump in and over-explain in great detail: if you wait to listen, you may be surprised by the simplicity of what they’re worried about.

Remember that your children will ask questions now and as they get older. After treatment, remain positive, but don’t say that the cancer is gone and will never come back. The message to convey is that you are taking the best care of yourself, seeing the doctor regularly and are hopeful.

Here are several resources for helping children understand cancer in the family:

• Dana-Farber Cancer Institute, Talking with Kids About Cancer
• American Cancer Society, Talking with Children About Cancer
• Kids Konnected, Questions Commonly Asked by Children Who Have a Parent with Cancer

Reviewed by Clifford A. Hudis, MD

Friends who have been with you for good times may have a variety of reactions to the tough reality of a cancer diagnosis and treatment. Some may not know how to respond or what to do. If they offer help, be specific about what they can do—whether it’s calling to chat, running an errand for you or providing companionship on a medical visit.

Others may pull away because they are fearful of your being ill or because breast cancer is something they worry about for themselves. With friends you’d like to keep but who have become remote, try reaching out to them in a setting where your diagnosis and treatment aren’t the focal point of conversation. This may help both of you reconnect.

There are also friends who will pull away and not return. They may do so because of their own fears or, quite simply, because they are too self-centered to be supportive to anyone—even a close friend—who is going through difficult times.

Although this, understandably, may add to your feelings of loss, focus instead on the caring people who remain strong allies or who come into your life as a result of your diagnosis. The old saying, "A door closes and a window opens" is very true here. People you’ve lost touch with, people you’ve never known before, casual acquaintances and longtime friends all may step forward and help create a new network to support you going forward.

Reviewed by Clifford A. Hudis, MD

Many breast cancer support groups that meet face-to-face draw members from the immediate neighborhood or sponsoring organization, such as a church or synagogue. That may not be a wide enough net to include many young women as group members.

Hospitals, cancer centers and breast cancer organizations in your area may offer more specialized support groups just for younger women. Talk with your oncology nurse, social worker or the public education department of the hospital or organization to locate a group suited to your concerns.

No matter where you live or what local facilities can offer, you can go online—as many young women dealing with breast cancer do—to find support, friendship and hope from others who’ve gone through, or are facing, the same experiences as you. Young women also are active participants in telephone hotline support networks.

Here are several options for help:

• The Young Survivor Connection on the LBBC Forums (online message boards) provides a place for young women to talk with, and support, each other.
• The LBBC Survivors’ Helpline (888) 753-LBBC [5222] can match you with a woman of similar age to talk with by phone. Our national, toll-free service is staffed by trained volunteers affected by breast cancer.
• The Young Survival Coalition is an international network of breast cancer survivors dedicated to young women’s concerns. The organization maintains an active online bulletin board which draws participants from around the world. It also has regional groups located in the U.S.
• The Y-Me National Breast Cancer Organization has a 24-hour national hotline staffed by trained breast cancer survivors. You can be matched with a counselor who is also young. Y-Me also runs support groups in some areas, including groups for women in their 20s and 30s.
• I'm Too Young For This provides peer support and social networks for young adults affected by cancer.
• Planet Cancer offers information, connections, entertainment and support. The heart of the site is the Forum, a thriving online community where users find and communicate with other young adults around the world about what's on their minds.

Reviewed by Clifford A. Hudis, MD