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November 2013 Ask the Expert: Talking With Children About Breast Cancer

Telling your children about your breast cancer diagnosis can be challenging. Children of different ages will react to the news in their own unique way, and they may ask you questions that require confusing or difficult answers. Still, being open with your children may be the best way to help them understand and process what you are going through and how their lives may change during your treatment period.

During the month of November, Living Beyond Breast Cancer expert Hollye Jacobs, RN, MS, MSW answered your questions about how to talk with children about what breast cancer is, the physical changes they may see you go through during treatment, how to handle the hard questions they may have, and how children of different ages may react to the news.

Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.

What is the best way to explain metastatic breast cancer to school-age children?  My son is 7 years old, and we are unsure of how to talk with him about long-term prognosis.

I’ve often seen advice on talking with children about cancer that says to answer the questions they ask, but not offer too much information.  When I give my boys an update on my condition and ask if they have any questions, they always say, “no.” Are boys less likely than girls to ask questions? How can I get them to open up? 

My daughter is 4 years old and I have metastatic breast cancer. I want to know if there are any books you recommend for helping my daughter understand what breast cancer is?

If I were to look into working with a therapist to help my 4-year-old daughter deal with my condition, do you have any recommendations or insight on what I should be looking for when screening therapists? 

Since I'm dealing with metastatic breast cancer and don’t know when I might die, but that this disease will shorten my life, is it appropriate to start talking about death with a 4-year-old? 

Do you have any suggestions about how to acknowledge that I'll likely be a breast cancer casualty and am dealing with the logistics of that now, when it's easier to do so, while also continuing to live as normal a life as possible for as long as I can? My son is a freshman in college and my daughter is a sophomore in high school.

Question: What is the best way to explain metastatic breast cancer to school-age children?  My son is 7 years old, and we are unsure of how to talk with him about long-term prognosis.

Ms. Jacobs: Talking with your son about your diagnosis and treatment, though painful, will ultimately be the greatest gift that you can give him.

Parents often avoid discussing a cancer diagnosis with children because they assume that “children can’t understand what is happening” or because they believe that “children shouldn’t be exposed to something so awful.” Exposing children to cancer is indeed brutal and heart wrenching, but children as young as age 2 are able to understand what is happening to them.

Avoidance may feel better in the short term, but it has the potential to do long-term damage. Even when a cancer diagnosis is not formally discussed, children know that something has happened and are consequently left alone with distressing information. This aloneness forces children to draw inaccurate conclusions or develop maladaptive ways of dealing with a cancer diagnosis. While it may seem hard to believe, a child’s imagination has the capacity to create things that are far worse than the reality.

I encourage you to do the following:

  • Plan ahead and think through what you are going to say.
  • Choose a time when you are calm, your child is well-rested and no one is rushed.
  • Describe the disease in factual, truthful, and developmentally appropriate language.
  • Tell your child that cancer is not contagious.
  • Reassure your child that he did nothing to cause the cancer.
  • Encourage your child to ask questions (frequently) and answer them to the best of your ability. If there is something that you don’t know the answer to, tell him that you will find out and get back to him.
  • Describe how his life may change, e.g., disruption of routines.
  • Encourage your child to share his feelings.
  • Tell your child that he will be cared for by someone he knows (and identify that person).
  • Seek professional assistance. Many hospitals and cancer centers have professionally led support groups for children where they can ask questions, talk about their feelings and share experiences.

I would suggest saying the following:

“Every person’s body is made up of cells. Cells make our bodies work. They are so tiny that you need a microscope to see them. Cancer cells don’t look or act like normal cells. They don’t allow our normal, healthy cells to work properly. They can grow very fast and spread. Cancer cells may group together to form a tumor. There are many different types of cancer. Cancer can grow anywhere in the body. My cancer is growing _____ and _______.  I am going to have _________ treatment and________ treatment.”

What if he asks if I’m going to die?

Your son may ask if you are going to die. Every child with whom I worked wondered if cancer means that a person is going to die, even if they don’t ask the question out loud. He may be afraid to ask you about death and dying if you haven’t been able to talk about it.

I would recommend that you say to your son:

“We are all going to die one day.  Right now I am here, and I am going to get treatment that will hopefully keep me here for a very long time.”

If you know more about your long-term prognosis, I would encourage you to be honest with him. I would also encourage you to have a social worker, psychologist or child life specialist help you with this conversation. Communicating with children is a great opportunity to teach them how to cope with life’s inevitable challenges. Best wishes to you!

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Question: I’ve often seen advice on talking with children about cancer that says to answer the questions they ask, but not offer too much information.  When I give my boys an update on my condition and ask if they have any questions, they always say, “no.” Are boys less likely than girls to ask questions? How can I get them to open up? 

Ms. Jacobs:  It is normal for children — both boys and girls — to be hesitant to talk about cancer. It is up to us to encourage them to talk, without pressuring them. A great way to facilitate dialogue is to do it while playing with children.

One way to get a dialogue going is to ask, “Are you by any chance wondering what cancer is?” or, “Do you think that cancer is contagious?”

If a child still doesn’t want to talk at that particular moment, it is okay to give him or her space to be a kid.

Below is a list of questions with suggested responses to common questions from children.

What is cancer?

The body is made up of cells. Cells make our bodies work. They are so tiny that you need a microscope to see them.

Cancer cells don’t look or act like normal cells. They can grow very fast and spread, and may group together to form a tumor. There are many different types of cancer that can grow anywhere in the body.

Is cancer contagious?

Cancer is not something that you can catch from someone else like you can a cold or the flu. You can be close to a person who has cancer and not worry about catching it.

Did I cause cancer?

Though they will rarely ask the question out loud, children wonder whether they caused cancer. It’s sad, but true. If this question isn’t addressed, children can carry this fear with them into adulthood.

Say, “No. Nothing that anyone does, says or thinks can cause cancer in someone else.”

Why do people get cancer?

Most of the time, no one knows why. It’s hard to not have all of the answers, but the truth is we don’t.

 What causes cancer?

There is still a lot we don’t know about what causes it.

Sometimes cancer can be caused by some chemicals, air pollution (smoke), certain viruses and other things inside and outside the body, but not always.

Do children get cancer?

Yes, unfortunately children do get cancer, but it is rare. More adults get cancer than children.

Who will take care of me?

There are lots of people who will help me take care of you when I’m feeling sick. When I’m getting my treatment, I’ll be around as much as I possibly can and we will do different things when I’m sick, like watch movies and read books. When I’m finished with my cancer treatment, I will be strong again. 

How is cancer treated?

People have different treatments for cancer. Sometimes, they have an operation to take the cancer out of the body. Sometimes they take medicine called chemotherapy that destroys cancer cells.  It is usually given through a needle inserted into a vein.

Sometimes people have radiation therapy to help get rid of cancer cells. It is done with a special machine that is made just for cancer treatment. The radiation is given only to the area of the body where the cancer is.

What are “side effects”?

Side effects of cancer treatment happen because the chemotherapy damages healthy cells as well as killing the cancer cells.

You will be able to see some of the side effects such as: my hair falling out, scars from my surgery, mouth sores and weight loss or gain.

Other side effects can’t be seen such as: feeling tired, feeling sick to my stomach, wanting to rest more, not being able to play.

After I’m done with all of my treatments, these things will go away.

When will you feel better?

Feeling better will take a long time because I have been very sick.  I’ll still be tired, but little by little I’ll be able to do more and more. In fact, every day I feel a little better.

Will the breast cancer come back?

I hope that it won’t. I am working very hard with my doctors to make sure that the cancer does not come back.

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Question: My daughter is 4 years old and I have metastatic breast cancer. I want to know if there are any books you recommend for helping my daughter understand what breast cancer is?

Ms. Jacobs: Absolutely!  Books are a great way to help explain a cancer diagnosis and help children process their emotions. My daughter and I read the same books together, over and over again.  

Here are two adult books that will help you through the process:

  1. How to Help Children Through a Parent’s Illness by Kathleen McCue
  2. When a Parent has Cancer: A Guide to Caring for your Children by Wendy Schlessel Harpham, MD 

Here are several children’s books that I particularly like:

  1. Baklay and Eve: What IS Cancer, Anyway? By Karen L. Carney
  2. Let My Colors Out by Courtney Filigenzi
  3. Nowhere Hair by Sue Glader
  4. Our Mom has Cancer by Abigail and Adrienne Ackermann
  5. When Mommy Had a Mastectomy by Nancy Reuben Greenfield

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Question: If I were to look into working with a therapist to help my 4-year-old daughter deal with my condition, do you have any recommendations or insight on what I should be looking for when screening therapists? 

Ms. Jacobs: First of all, I think therapy is a wonderful way to help children cope with a cancer diagnosis in the family. Asking for help is a strong and excellent way to advocate for them. 

Here is a list of questions to ask when screening therapists:

  1. What degree(s) do you have? When did you graduate?
  2. What license do you have? What are your training credentials? Are you affiliated with any professional organizations?  (You want to hire a licensed therapist!)
  3. How many years of experience do you have?  Do you have experience working with children who are my daughter’s age?  Please describe.
  4. How would you propose that we would work together? What does a typical session look like?
  5. Will you work with my child’s school and teachers? How often will you communicate with them?
  6. Have you ever been disciplined for an ethics violation?
  7. What is your availability (before school or after school)? How long are your sessions?
  8. How do you communicate?
  9. What is your availability in an emergency? If you are not available, what are my alternatives?
  10. What is your fee? Do you bill insurance? Do you have a sliding scale? Do you charge for phone calls or emails between sessions? 

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Question: Since I'm dealing with metastatic breast cancer and don’t know when I might die, but that this disease will shorten my life, is it appropriate to start talking about death with a 4-year-old? 

Ms. Jacobs: Thank you for this important question. My suggestion is to always begin where your child is. When it comes to discussing death, tell your child, “We are all going to die, but we don’t know when. My cancer is never going to go away, but I’m going to work with my doctors to do everything that I can to live for a long time.” 

Most children between the ages of 3 and 5 have a naturally-occurring fascination with death. So, when talking with your 4-year-old, it will likely be on his or her mind and I would encourage you to discuss it. 

Additionally, I would encourage you to:

  1. Encourage ongoing dialogue. The more communication the better. One conversation is not enough. Children are better able to take in and cope with small amounts of information at a time.
  2. Be honest. Use developmentally-appropriate words and concepts that children can understand.
  3. Encourage children to ask questions. Make sure you listen to the questions asked and concerns expressed. Don’t assume and please don’t project your fears onto your children. Answer the questions that children ask; keep it to that. Do not volunteer more information than asked because children may not be ready to handle that information. They know what they can handle and when.
  4. Know the facts. Be able to explain what metastatic breast cancer is. Use simple, clear facts and avoid opinions.
  5. Normalize feelings — especially fear. It is important that a child not be left with distressing feelings. A child may demonstrate distressing feelings by throwing temper tantrums, an inability to sleep or having meltdowns. Pay attention to unusual behavior and address behaviors head-on.
  6. Reassure children that they will be taken care of and that you will do everything you can to protect them.
  7. Maintain a consistent routine because children equate a routine with stability and security. 

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Question: I was diagnosed with triple-negative metastatic breast cancer in July of 2013, after going through treatment for early-stage breast cancer from 2011–2012. We have a son who is a freshman in college and a daughter who is a sophomore in high school.  

We told the kids the truth — that I'm back in chemo; that while chemo won't kill the cancer, it often keeps it in check; and that we hope that it will for a long time. I'm doing well on chemo so far. The medicine is working with manageable side effects.  

While we hope for the best, we're preparing now for when the treatment stops working and the options end. This includes visiting my rabbi to discuss funeral plans. Our daughter asked my husband recently why we went to see the rabbi. He had trouble answering the question. 

Do you have any suggestions about how to acknowledge that I'll likely be a breast cancer casualty and am dealing with the logistics of that now, when it's easier to do so, while also continuing to live as normal a life as possible for as long as I can?  

Ms. Jacobs: First of all, I’m sorry that you have to contend with this now. However, your wisdom and courage to deal with the logistics now, when it is indeed at least physically and intellectually easier to do so, and while continuing to live as normally as possible, is inspiring. Additionally, you are modeling exceptionally healthy coping mechanisms for your children, which is a great gift to them. 

When it comes to communicating with your older children, I would encourage you to tell them the truth. There is no doubt that this will be emotionally challenging and burdensome, but your children have the cognitive, emotional and social capacity to understand what is happening. Including them is the right thing to do. 

I would also encourage you to reassure them that you are not “giving up” and that you are going to continue to do everything that you can to be with them for as long as possible. Tell them that by getting your affairs in order now, you are being proactive so that you don’t have to burden them with any details in the future.  Honesty and reassurance is key.

All of my best wishes to you.

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