What should I know about a breast cancer diagnosis?

Cancer. No one wants to hear these words. The American Cancer Society tells us that about 252,710 new cases of invasive breast cancer in women will be diagnosed in 2017. Approximately 63,410 new cases of non-invasive carcinoma in situ (DCIS, or breast cancer in its earliest form) will be diagnosed in 2017. The outlook is brighter than ever before for these women thanks to early detection and improved treatment protocols. In the U.S. today, there are 2.8 million breast cancer survivors!

If you or a loved one has just been diagnosed with cancer, your response to the news was likely a mix of emotions. Initially, you might have been shocked or in disbelief. Learning more about breast cancer treatment and the resources available to help you through this journey might help empower you so that you can do what you need to do – and go on with your life. You do not have to face cancer alone.

Coping with your emotions

Are the feelings I’m having common?

Cancer can affect a person and their loved ones on many different levels – psychological, emotional, interpersonal, practical and financial. A cancer diagnosis can turn your world upside down, making it difficult at times to make sense of things in life that used to be perfectly understandable.

After your diagnosis, as you begin to process this new information you have been given and consider how cancer is going to affect your life, a rush of new feelings might emerge. Dealing with these new thoughts and feelings can be stressful and challenging. At times, you might feel like you’re on an emotional rollercoaster. Feelings that are common include:

  • Anxiety and fear: You are frightened about what the treatments for your cancer will be like.
  • Guilt: You look back and wonder why you developed cancer. You wonder if somehow you could have prevented it.
  • Loneliness: You feel that none of your family and friends really understands what you are going through, so you must face this disease alone.
  • Loss of control: Hearing you have cancer can overwhelm you, making you feel like you are no longer calling the shots in your own life.
  • Helplessness: You feel there is nothing you can do to change or improve your situation. Like loss of control, it is out of your hands.
  • Distress: Thinking about cancer constantly can wear you out emotionally.

Is it normal to feel this sad?

It is normal to feel sad after learning that you have cancer, but if that sadness persists and you lose interest in the things that you normally enjoy, you might be clinically depressed. There are other signs of depression as well. Try not to mistake symptoms of your cancer for signs of depression. Common signs of depression include:

  • Appetite and weight changes
  • Irritability
  • Loss of energy
  • Difficulty concentrating
  • Feelings of guilt or worthlessness
  • Insomnia or sleeping too much
  • Thoughts of suicide

If you suspect you are depressed, talk with your healthcare provider, who can assist you to find professional help. Speak to your social worker who can assess your situation, provide counseling or link you with services which may be helpful. You might need treatment, which can include counseling and possibly medications.

I feel sad, confused and angry. What should I do?

These feelings are common responses to hearing you have cancer. It is a normal reaction to a disease that has completely altered your life. Anger can be either productive or destructive depending on how you express it. Negative expressions of anger include hostile words or behaviors toward your friends, family or healthcare team.

There are healthy ways to express anger. Let your family know that you feel more irritable, and make sure they know they are not the cause of the anger. It is important that you establish an outlet for your anger that is positive and constructive.

What else can I do to deal with my emotions after diagnosis?

There are some practical things you can do to help you deal with your emotions. There are many sources of support (see below) that can offer additional information, as can the members of your healthcare team. Some suggestions for dealing with your emotions include:

  • Take a walk, exercise or do another physical activity at full intensity (if you are able).
  • Write in a journal.
  • Talk to someone, a friend or family member.
  • Find a support group.
  • Get a massage.
  • Perform a relaxation technique.
  • Try listening to music or doing art therapy.
  • Talk to your doctor or another member of your healthcare team.

Give yourself time. Hearing you have cancer signals some big changes in your life. Take some time to take it all in. Think about how and when you want to tell your family and friends about your diagnosis.

Learn about your cancer. Knowing the facts about what you’re facing helps you feel more in control and takes away some of the fear of the unknown, because you will have an idea of what is happening to you and what to expect. It also helps you make more informed decisions about your care.

Participate in your care. Ask questions and ask the doctor to provide explanations in terms you can understand. Write out your questions and the doctor’s answers when you have an appointment so you can review them later. Don’t be afraid to be your own advocate.

Develop a support system. Your family and friends are probably the first places you will go to find support, but don’t overlook other sources. Support groups, social workers and other health professionals are available if you have difficulty dealing emotionally with your diagnosis.

Look after yourself. Help yourself emotionally by taking care of yourself physically. Get plenty of rest and make time to relax. Try to exercise as you are able. Eat a healthy, balanced diet and avoid drinking excess amounts of alcohol.

Don’t lose hope. Patients may jump to conclusions based on outdated information. People may think they are being helpful when they share their own cancer experiences but there are many different kinds of cancer and treatment. What they or their family experienced may not apply to your situation at all. The outlook for many types of cancer today has improved dramatically. Many cancers are treatable or managed. In other cases when the situation is more chronic, symptoms can often be managed to make life with cancer more comfortable.

I’m overwhelmed. Who can I turn to for help?

Oncology social workers, members of the cancer care treatment team, are highly skilled practitioners who understand the many challenges facing patients dealing with cancer and its treatment. Social workers are specially trained to assess the unique needs of cancer patients and provide and coordinate services to meet those needs. Services they provide include individual, family and group counseling to keep relationships strong; counseling to cope with changes in self-image and sexuality; referrals to community social services; and patient advocacy. Some in- patient social workers assist with discharge planning to facilitate the transition from hospital to home. Your oncology social worker is an integral and important member of your healthcare team.

You may speak to any member of your treatment team to let them know that you are feeling overwhelmed and could use some extra help. Remember that even when individuals are very emotionally healthy before they are diagnosed with cancer, they can still benefit from support from others at various times during treatment for cancer.

Your Family and Your Diagnosis

That mix of emotions you felt when you learned of your cancer diagnosis is very likely going to spill over to your family when you share the news with them. It might be difficult for them to cope with the many emotions that erupt when cancer threatens a family member and disrupts the household and routines of daily family life. There are things you and your caregivers can do to help ease them through this difficult time, and there are also resources available to help them. (See “Where can I find more information?” below.)

How do I tell my family about my diagnosis?

Having cancer is scary, and talking about it can be hard, especially telling your family about your diagnosis. A member with cancer affects the whole family, but family members often become the person with cancer’s greatest support system. Don’t feel you have to tell anyone right away. Take as much time as you need after your diagnosis. It’s important that you feel ready to tell your partner, children and other family members about your cancer. You may choose to limit how much you share with some persons. There are support programs in the community for family members who may need additional support which they can attend by themselves. If you wish, there are some programs you can attend with your family.

Telling your partner about your diagnosis

Your partner is your primary source of support, so it’s important to be open and honest about your feelings, fears and concerns. Allow your partner to express his or her feelings as well though your partner may handle feelings differently than you do. Sometimes it takes time to deal with the information and your partner may cope by staying busy rather than talking. Keep the lines of communication open. Let your partner know what you need, for example just holding your hand without having to talk and trying to “solve” your problem.

How do I help my children deal with my cancer diagnosis?

When someone in the family has cancer, it affects everyone, even the children. You might wish you could shield your children from this news, but it’s important that you tell them about your diagnosis. Your children will likely overhear people, even you, talking about you and your cancer, so this is an opportunity to influence their understanding of the disease and your family’s situation.

The approach you use to help your children manage the changes that will occur due to having a family member with cancer differs with the ages of the children. What you say and how you say it when you tell your children about your cancer depends on their age and maturity, but there are some general guidelines that might help you deliver the news appropriately.

Before you say anything, determine what you want the children to know and who will do the talking. Will you tell them, or will it be your partner or a trusted caregiver? If you are too emotional and you don’t think you can do it without upsetting the children, have someone else do the talking. Some children may have questions or be tearful and others will want to get back to playing. Allow time after you tell them to deal with their reaction. You may find that you will have conversations in the car or at quiet time when they bring up questions.

Some parents use children’s books about cancer to tell their child about their own cancer or as a follow up to their conversation. A list of books is included at the end of this section.

Depending on the ages of your children, you might want to tell them individually so you can tailor your message to each one. Some examples of what you may say are:

  1. I have an illness called cancer. It means that there are some things growing inside of my body like a bump that doesn’t belong there. Many people have cancer and there are doctors who can help with medicines to make the cancer go away.
  2. I will be going to the doctor a lot. Aunt Carrie will sometimes help out and pick you up from school. The doctor is helping me, but the medication sometimes makes people more tired. So we’ll be able to hug a lot and be together, but I may have to rest a little more.
  3. It’s nobody’s fault.
  4. You can’t catch it.
  5. Things will change at home, but we’ll work together to make it alright.
  6. This is what you can do to help.
  7. I love you!

Infants and toddlers

  • Try to maintain routines as much as possible.
  • Have your partner or an adult the child knows and trusts consistently care for the child.
  • Cuddle with the child frequently.
  • Record yourself reading your child’s favorite storybooks, and play them when you cannot be there.
  • For older toddlers, when you’re not home, have your child’s caregiver reassure your child that you will be back soon. “Mommy will read you Goodnight Moon before you get your bath tonight.”

Preschool

  • Try to maintain routines as much as possible. Have a consistent caregiver or daycare.
  • Set aside some time to spend each day with the child. If you are too tired, have your partner or a caregiver take time to pay special attention to the child.
  • Reassure them that someone will always be there to care for them.
  • Encourage the child to express his or her feelings creatively by making Get Well cards, coloring and drawing.
  • Children at this age have very short attention spans and limited understanding, so you need to keep it short and very basic. Very young children respond to visual cues. After you tell them you are sick, you might consider using a doll to show them where your cancer is. For the young preschooler, explain that Mommy is sick or has a “boo-boo” that will get better and the doctor is helping her.

You can tell older children about things they might see like, “Sometimes medications I take to make me feel better might make my hair come out for a while. I will look different and I might wear a pretty scarf until it grows back. It doesn’t hurt, but I might look funny for a little while.” Some families involve their child in participating in mom getting a haircut and picking out a scarf to wear. A general outline might include the following:

  • Explain that Mommy has to go to the doctor a lot, and things might be different at home (schedules, caregivers, etc.).
  • Briefly describe how your treatments might make you feel very tired or look different. Reassure them that no one else can catch the “boo-boo.”
  • Reassure the child that if Mommy seems sad, it’s not their fault, or if Mommy doesn’t feel like playing, it’s not because she doesn’t love you.
  • Stress that it wasn’t anything they did that made Mommy get sick.
  • Allow the child to ask questions and express his or her feelings about what is happening to Mommy and in the family.
  • Use opportunities to point out other individuals who you may see out in the community who appear to be having cancer treatment.

School age

  • Keep your children up to date about your treatment and condition, but don’t overwhelm with too much information.
  • Let all your children’s caregivers know what you have shared with your children about your cancer. Be sure you’re sending them a consistent message.
  • Encourage your children to express their feelings creatively by making Get Well cards and drawing.
  • Talk to your children’s teachers and guidance counselor. Some schools have support groups for children who have parents who are ill.
  • Reassure your children that they did not cause the cancer, and that there will always be someone there to take care of them.
  • Keep to their home and school routines as much as possible. Encourage them to continue with their after-school activities and sports.
  • Encourage them to ask questions about the cancer and its treatment. Be open and honest with your answers.
  • Allow them to express feelings of frustration, anger and fear.

Children are at different levels of maturity and understanding at this age, so you might have to adjust accordingly. Younger school age children might need little more than the preschoolers, but the older children might already have a basic understanding of cell function and human biology. For them, consider this strategy:

  • Give an age-appropriate explanation of the cancer and the treatment, including where it’s located.
  • Explain that things might be different at home (schedules, roles, caregivers, etc.) while you go through your treatment, and these are ways you can help. “Grandma said you can sleep over on the weekend.”
  • Prepare them for changes in your appearance and moods. “I might lose most or all of my hair for a while but it will grow back, and I might be tired sometimes and not be able to play tag but we can still watch movies together and read books.” The child may help with choosing scarves or go wig shopping.
  • Allow children to draw about their experience or act out with dolls what they experience.
  • Discuss what they might say to their friends and people who ask them questions including, “Thank you for asking. My mom is getting better. Let’s go back to playing ball now.”
  • Encourage them. “Yes, cancer is serious, but I’m working hard with my doctor to fight it.”
  • Reassure them. “Nobody did anything to cause this to happen.” “Cancer is not contagious.” “Someone will always be here to take care of you.”
  • Answer their questions honestly.

Teens

  • Keep them up to date on your condition and treatment. Encourage them to ask questions about it, and answer them honestly.
  • Keep to routines as much as possible. Tell them it’s OK for them to have fun and go out with their friends. Encourage them to stay involved with their after-school activities and sports.
  • Involve them in making decisions that affect them and the family when appropriate.
  • Encourage them to express their feelings about your cancer and address any concerns.
  • Reassure them that the family is strong and will fight through this difficult time together.

Teens are likely to have some understanding about cancer, although it might not be accurate, so this is your chance to put the record straight. With most teens, you can give a more complete explanation of the disease and treatment.

Teens’ reactions may be unpredictable at hearing the news. They might have lots of questions or they might clam up and not want to discuss it much. Either way, it’s important to maintain an open line of communication with your teen and you may find that sharing short snippets of information when you are in the car or in between is helpful rather than long reports. Give brief reports on your treatment and condition and reassure your teen if that accurately reflects your condition. They may have difficulty bringing up issues themselves.

  • Give an age-appropriate explanation of your cancer, including the name of the cancer, where it is located and how it will be treated. Remind them that many others have been treated for cancer.
  • Explain how your cancer might affect the whole household and suggest things they can do to help.
  • Encourage questions about your cancer and treatment, and be honest in answering them. “I know this is complicated. Is there anything you don’t understand?” “Are you confused about anything that’s going to happen now?”
  • Discuss things to say to their friends and people who ask them questions about your cancer. Help them to find words to establish boundaries if they do not want to answer others’ questions.
  • Encourage them to express their feelings. “How does this make you feel? Are you scared? Angry?” “What can I do to help?”
  • Reassure them that, “This is no one’s fault.” “Someone will always be here to take care of you.”

Stress Free Now

If you or someone you know is struggling with the stress of a cancer diagnosis, you have access to Cleveland Clinic’s clinically proven, six-week online course for reducing stress and increasing positive emotions and energy – Stress Free Now. The course teaches participants how to practice relaxation techniques and provides real-life strategies for managing the body’s reaction to stress.

Financial Issues

Most women diagnosed with breast cancer will not be eligible for Social Security disability. Applications for limited charitable funds are available through the American Cancer Society Navigator 216-444-8576 or online. Your social worker may also be able to link you to other resources.

Advance Directives

Everyone over the age of 18 should complete these important documents. The power of attorney form designates who would be your medical decision maker if you were temporarily unable to do this. Living Will allows you to specify your wishes regarding end of life care. Women who are separated but not legally divorced and do not have advance directives may have unexpected problems if they want someone other than their spouse to make their medical decisions.

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