Involving Your Family In Your Breast Cancer Journey
By: Jan Johnson
Should you involve your family after a breast cancer diagnosis?
Among the many difficult questions parents face when a family member is diagnosed with cancer is “What do I tell my children?” Fearful that they might upset or worry their youngsters and teens, some parents withhold the news. But even at a very young age, children can sense when something is wrong. If not told the truth, they might imagine that things are worse than they really are or even that they themselves are the cause of the problem.
If a family member has cancer or is concerned about someone else with cancer, children often sense that something is wrong, even if they don't know what it is. Although it may be challenging, talking with your children about the cancer diagnosis in words that they can understand is better than hiding it. Avoiding the topic may lead children to believe that the situation may be worse than what it is and create feelings of confusion and fear. Remember that children may overhear conversations between adults and worry more if they feel that important news is being withheld from them. As you talk with your children, listen to their concerns and answer their questions to the best of your ability.
Tips for talking with your children
Tell them about the illness. Although cancer is complicated, there are appropriate ways to discuss it with children. For example, it is usually enough to tell very young children, “I am very sick, so I am going to the hospital for special medicine.” For older children, a more detailed explanation is better. The more they understand the less helpless and afraid they are likely to feel. Find out more about how a child understands cancer.
Name the illness. You may be tempted to avoid using the word “cancer.” However, using that term gives your children specific information about your diagnosis that reduces confusion and misunderstanding.
Practice your explanation in advance. Remaining as calm as possible while talking to children about a cancer diagnosis allows them a chance to ask questions and express their feelings. Consider practicing the conversation with a trusted loved one who can give you feedback on your tone and choice of words. Your explanation should focus on addressing your children's questions and worries.
Address feelings of guilt. Younger children are more likely to feel responsible for the illness. Reassure them that nothing they or anyone else did caused the cancer.
Explain that cancer is not contagious. Most children first experience sickness when they get a cold, and they often hear adults say that they caught the illness from another person. They need to understand that cancer is not contagious. Reassure them that it is safe for them to be with you or the person with cancer and that they are safe.
Try to balance optimism with realism. Telling your children that you will be fine will make them more confused and upset if your health does not improve. Offer a realistic but hopeful assessment of the situation, and focus on the steps that you are taking to treat the cancer. For example, telling your children that you are “working hard with your doctors to get better” accurately sums up the situation without false promises.
Keep in touch with your children. If you are in the hospital for an extended time, your children may think that you don't want to be at home with them. Staying in touch will help reassure them that the illness does not affect how much you love them. Making a daily phone call from the hospital, having a relative deliver a note, sending a text or e-mail message, and staying in touch in other creative ways may reassure your children of your love. If they are used to you reading to them each night, record yourself reading some of their favorite books so they can listen to at home to maintain a sense of their previous routine.
Take their feelings seriously. Children have many different reactions when they learn that a parent has cancer. These feelings often include anger, sadness, guilt, fear, confusion, and frustration. All of these responses are normal. Let them know that it is okay for them to have many different feelings and that you have many of the same feelings, too.
Welcome questions. Let your children know that they are free to ask any question. Be honest, and don't be afraid to say, "I don't know." You may tell your children, "I don't know the answer, but I will ask the doctor at my next appointment and get back to you on that." For children, the amount of information you give them is usually less important than making them feel comfortable with the situation.
Help your children understand treatment. Children often fear the unknown. Give an age-appropriate explanation of the treatment process. Remember that children may confuse the side effects of treatment with the symptoms or signs of the cancer. For example, they may think that chemotherapy is bad because it has side effects such as fatigue, nausea, and vomiting. Explain that, although the treatment may have some difficult side effects, it is ultimately working to help you get better.
Prepare them for the physical side effects of treatment. Cancer and cancer treatment may affect your appearance. Physical changes such as hair or weight loss may frighten children or make them think that you have changed. Explain potential physical changes before they occur so that they are prepared. For example, you might say, “Because I am sick, I may lose weight, and my hair may fall out. But, don't worry, my hair will grow back. And I will always be the same mommy on the inside.”
Talk about anticipated changes in the family routine. Try to keep your children's routines as consistent as possible, but acknowledge that some things will be different. For example, let them know if a neighbor will be picking them up from soccer practice or if there will be times when you will not be sleeping at home when you are in the hospital getting treatment.
Let children help, but don't burden them with responsibility. Let your children know that they can help in many ways: running an errand, getting you a glass of water, or performing another age-appropriate task. These are a few ways you can help empower your child during this time. However, don't burden them with too much responsibility. It is stressful having someone being sick in the family. Your children will need lots of time to play, relax, and enjoy their childhood. This is especially important to consider when talking with your teenagers, who need to maintain their friendships and pursue their interests. Asking them to spend too much time caring for younger siblings may increase their stress levels. It is important that children know that they can still talk about what else is going on in their lives (at school and with friends) with you.
Be prepared to discuss death – if this is even in the picture: Although it is difficult and sad, it is important to be prepared to discuss death with your children. You may want to consult with a trained counselor or clergy member first. Consider your child's age when discussing death. Preschoolers, for instance, do not understand that death is final. In general, by age 10, children begin to understand that death is the end of life. Try to use clear, specific terms; avoid euphemisms such as “passing away”, “sleeping forever” or “put to sleep” because children may confuse sleep with death and fear that they may die in their sleep or that you would wake up from death. In addition, remember that it may take a long time for children to fully understand and accept such loss.
Consider counseling. To appropriately address children's unique needs and their developmental stage, many people with cancer consult with counseling professionals soon after they are diagnosed. Such counseling can help parents break the news, manage their children's reactions, and reassure their family that they are doing everything possible to get better but that they will need their family's help and support. Some parents may also benefit from talking with a counselor who has training in child development. Ask your doctor or nurse about the resources available at your treatment center and in your local community. Learn more about the benefits of counseling.
“We’re Going To Be Survivors”: How Couples Cope Together with Cancer
Clinicians and researchers have known for a long time that having cancer can change or threaten a person’s identity, or how they think of them self. For example, during cancer treatments, patients might not be able to fill all the roles they filled in the past. Understanding the challenges associated with cancer survivorship has become increasingly important as more and more people are living beyond cancer treatment. Today, an estimated 13.7 million cancer survivors are living in the United States.
One particularly interesting finding was that, in addition to talking about challenges to their own identities, the participants talked about changes to their “couple identity” or the joint sense of how they saw themselves as a couple. Some couples said that coping with cancer made the relationship more central to their own identity. In other words, while they had viewed themselves as independent from one another before the cancer experience, their relationship became a crucial part of who they were after the cancer diagnosis.
Talking to Your Spouse or Life Partner
If you are married or living together in a committed relationship, your spouse or partner is likely to feel the greatest impact from your diagnosis with breast cancer. It’s natural for your partner to fear for your health and well-being and feel concerned about what will happen over the long term. Since the two of you run a household together, you’ve probably grown accustomed to certain roles and responsibilities. Your partner may wonder what will happen if you cannot always handle your usual tasks, whether that means earning income, caring for children, paying bills, preparing meals, or any of the other activities of day-to-day life.
Breast cancer can intensify whatever patterns of communication existed in your relationship before. If you and your partner have always been able to talk through difficult issues, that ability will probably work well for you now. If open communication has been difficult, you might need to do some extra work to talk about cancer and what it means for your relationship and your household.
Although every relationship is unique, you may find it helpful to:
Involve your partner in medical appointments when possible. By coming with you to doctor’s appointments, your partner will gain a firsthand understanding of your diagnosis, the treatment options, and any side effects you might experience. Your partner will be better prepared for how you’ll be feeling, and you won’t need to explain everything your doctor said after every appointment. And if your partner has a question, he or she can ask your doctor directly.
Be clear about your needs. Tell your partner exactly what you need. On some days, you might want to hand off certain household tasks that you typically handle, such as cooking or supervising homework if you have children. You might ask your partner to field phone calls from concerned friends, talk through treatment options with you, or simply sit with you at the end of a long day. Try not to assume that your partner will be able to sense how you’re feeling or what you need.
Ask your partner what he or she needs. As you, your family, and friends focus on your treatment and recovery, it is easy for your partner to feel lost or overburdened. Talk to your partner about what he or she needs to get away and recharge. Encourage regular exercise, outings with friends, or any other activities your partner enjoys.
Schedule time alone, just the two of you. This can be especially challenging if you have children, but it’s important. Schedule regular times for you to get away from distractions so you can talk — not just about cancer, but about anything you have been thinking or feeling.
Accept the fact that you may have different coping styles. Each person responds to a cancer diagnosis differently. You may want to do lots of research, while your partner may prefer to rely solely on the doctor’s guidance. One of you may be consistently upbeat and optimistic, while the other may need to ask all of the “What if?” questions. Talk about your differences and tell your partner what works best for you.
Figure out what adjustments will be needed in the household, and then ask for help together. While you’re going through treatment, there are likely to be times when you cannot help with tasks such as household chores, shopping, errands, and caring for children and pets you may have. You may have to cut back on work time, which could impact household income. Your partner might need outside support to keep the household running smoothly. Work together to figure out what kinds of help you need, and then approach family members, friends, and neighbors for assistance.
Prepare for possible changes in your sexual relationship. Surgery, chemotherapy, and other treatments for breast cancer can affect you both physically and emotionally. Your body may feel and look different, and at times you may feel weak, nauseous, or tired. If you are a premenopausal woman, chemotherapy and some hormonal therapies can cause temporary menopausal symptoms or push you into permanent menopause, lowering the levels of estrogen in your body. Your sex drive may lessen and you could experience vaginal dryness and irritation. Talk honestly and openly with your partner about these changes and ask for understanding while you are going through treatment. To learn more, please visit our Sex and Intimacy section.
Get professional help if you need it. A cancer diagnosis can place a great amount of stress on even the strongest relationships. A therapist, counselor, or social worker can help guide you and your partner through difficult conversations if you are having trouble communicating. If you’re interested in finding a professional to talk to, ask your doctor for recommendations.