Dr. Cynthia Moore

Cynthia Moore, PhD, is a child psychologist in the department of child and adolescent psychiatry at Massachusetts General Hospital, and clinical instructor in psychiatry at Harvard Medical School. Her clinical work focuses on providing parent guidance to adults treated in the MGH Cancer, through the Parenting at a Challenging Time (PACT) program. This program provides consultation to parents with questions about how best to support children dealing with parental cancer. Her research interests include investigating how having parenting responsibilities changes the experience of facing cancer, and documenting the particular concerns about children's reactions to parental cancer that cause parents distress. She is a member of the American Psychosocial Oncology Society and the American Psychological Association.

Questions & Responses:

Question Four:

I am 40. I have 2 sons, 5 and 7. I was diagnosed when they were 8 months and 3 years old. They remember me "being sick" and losing my hair from "the medicine that was helping me get better." Other than that, we have not discussed it very much with them. What information is appropriate for them at this age? I am healthy now and feeling fine. However, I know that there is another very good chance of recurrence down the line. How can I prepare them for this?

And:

I'm 34. In 2005 when I was diagnosed with breast cancer my two girls were 2.5 and 4 months. I was open with my 2 1/2 year old at the time (Mommy had a boo boo that the doctor made better)...but I don't think a year plus later, any of it is retained (which is fine with me). I also tested positive for the BRCA-2 mutation which increases their risk of developing breast cancer as well. How much do and WHEN do I share with them my breast cancer diagnosis?

Dr. Moore's Response:

Working out how to make sure children have an age-appropriate understanding of an important, but complicated, piece of family history can be challenging. Parents with previous marriages or who have adopted a child face something of a similar challenge. It's a challenge worth facing, though, for a couple of reasons. First, ensuring your children know from an early age that cancer is part of your history prevents them from feeling kept out of the loop were they to learn of it much later. Second, by talking about your cancer history as your children grow, you allow their understanding of the information to develop gradually over time. Children understand the same information differently at different ages; your child at 3 years old will have different questions and reactions to discussions about your cancer than at 8 years old and 13 years old. Third, it's usually much easier to discuss difficult news when it's not affecting your day-to-day lives. Talking to them when you're healthy, rather than in the middle of a crisis, will allow you to feel less anxious and can minimize the impact of the information on them, since children tend to worry about the ways their own lives will be changed.

It can be easier to bring up a difficult topic if you do so in a way that conveys some broader message or lesson, rather than just on its own. For example, you might talk with your kids about how eating healthy food and exercising are important to you because since you had cancer you try hard to do everything you can to stay healthy. Or, you could talk about the value you place on giving to charity, and describe how you will give money to a group that helps people with cancer since you had that yourself a while ago. Or, that you are making dinner for a family in which someone is having a hard time, because you remember how much you appreciated that kind of help when you had cancer and weren't feeling well. Another approach is to talk about your cancer when you can tie it to a concrete, current event your children are aware of-for instance, when you have to see the doctor for check-ups. You could mention that today you have a doctor's appointment with your oncologist-the doctor who took care of you when you had cancer-to make sure you're doing everything you can to stay healthy. Once you decide that you are going to bring up the issue, and feel prepared, you'll probably find lots of openings! The goal isn't to be talking about cancer all the time, but to find ways to bring it up once in a while in ways that are meaningful for your family.

There isn't an easy way to prepare children, young ones in particular, for a cancer recurrence. Suggesting that it might recur someday could frighten or confuse them, without changing much about how they would feel or cope if it did happen. On the other hand, it is important not to promise that you are cancer free forever. If a school-aged child asks about whether your cancer could come back, be honest, but hopeful: "It's possible, but I really don't think it will. I'm doing everything I can to stay healthy, and I get regular check-ups so I can be sure it hasn't come back. If it did, I'd get the best treatment I could, just like before." Were cancer to recur, you could talk then about what your children remember going well and not so well about the experience the first time around and build on your strengths. Generally, unless a child is asking about events that might occur in the future, it's better to focus on preparing them for challenges likely to arise in the short-term, such as a new school year or a friend moving away.

Having risk factors that increase the likelihood that your children could develop cancer is a big worry for parents. If they are not asking direct questions about their own risk, sharing this information with children before they are old enough to do anything about it seems likely to raise anxiety without any real benefit. When your children reach adolescence, you might make an appointment to talk again with your oncologist about the care she/he would suggest for your children. By then, the science will have advanced, so you will want the most updated recommendations for screening and prevention.

Question Three:

Hi there, I am 37 and was diagnosed with BC at 35. I had a lumpectomy, chemo & radiation. My daughter was 2 at the time and knew the scar on my breast and hair loss were related. Now she is 3 1/2 and I'm going to have double mastectomies with reconstruction. I told her mommy is having surgery and she got scared. She didn't want me to hold her because she thought I was going to remove her breasts! She pinched her little nipples and it made me sad. What words do I use to explain to her that I'm having this surgery and what do I say to let her know that I will be ok and she will be ok?

Dr. Moore's Response:

It can be a real challenge to explain complicated procedures to very young children, and even more of a challenge to feel certain about what they really understand. Since you've already begun the process of explaining your surgery to your daughter, and she seemed distressed, it might help to ask her to tell you what she thinks will happen during the surgery, and why you're having it. If you get a clearer sense of her understanding and the parts she's confused about, you'll be better able to clear things up. Listen for signs that she feels responsible in some way for any part of your surgery or need to be away, because it's common for preschoolers to assume mistaken responsibility for things. If she's not able to explain much, she might be able to show you on a doll. Sometimes parents get clues about how children are thinking by paying extra attention to their pretend play-young children work through worries more easily by playing than by talking.

Once you better understand what she is thinking, you could offer her an explanation along the lines of: "When you were really little I had cancer in my breast and I took special medicine to make the cancer go away. Soon I will be going to the hospital to have an operation to fix my breasts so the cancer doesn't come back." If she has questions about the operation, you could tell her that you will take medicine to make you fall asleep and medicine that will keep your body from hurting, then the doctor will fix your breasts, then you will wake up and stay in the hospital for about (fill in the blank) days. If after you talk more with her, you believe she thinks that someone is going to remove her breasts, too, you could tell her that she doesn't have cancer, so her breasts don't need to be fixed. You could add that it's just like how when your car is working fine, you don't have to take it to the garage-things that aren't broken don't need to be fixed!

It will also be helpful to talk about what her life will be like while you are in the hospital. Let her know who will be caring for her while you are away, and the other ways your being in the hospital might affect her. For example, "While I'm away, Grandma will sleep at our house and take care of you while Daddy is at work. Grandma will take you to preschool. Daddy will be home every night after dinner to put you to bed. Are there things you like to do we should make sure Grandma knows about?" As much as possible, keep the day-to-day routines consistent-it will help her feel more secure.

Sometimes parents wonder whether it's all right to allow their child to visit them in the hospital, if there's no medical reason for children to stay home. Usually kids and parents enjoy visits as long as the children are well prepared, and expectations are reasonable. If your daughter might visit, have another trusted adult tell her in advance about what she might see, hear and smell. For example, "Mom has a thin tube, like a really long bendy straw, attached to her arm that goes up a tall pole. It's the way she takes her medicine. She's in a big bed that moves when you push a button. She has a roommate who sometimes talks loudly. The hospital smells a little funny, kind of like the medicine we put on your cuts. After we visit with Mom, we'll go to the cafeteria and get a snack." It's best for children if they can leave when they are ready, so it can be helpful to have a second adult around to take her out of your room if other family members will want to stay longer.

If it turns out that you aren't feeling well enough for your daughter to visit, or it's too far, she might like to say hello on the telephone, or send notes and drawings back and forth. Knowing that you are thinking about her will help and she might enjoy hearing that her drawing is the first thing you look at when you wake up. Before your surgery, you could also tape record her favorite stories for her to listen to while you are away; some children really like hearing their parent's voice, but others end up feeling more sad, so as the expert on your own child, that's a decision you're in the best position to make.

Question Two:

I am a 38 year old mother of one. Since my diagnosis in September of 2005, my son who is now 10 years old is very "clingy". He has always been a very affectionate child, but now he clings to me all the time. I know this is probably a normal reaction, but how much it too much? Also, how do you reassure your child that you're going to be ok when you've had cancer? I'm afraid that if I tell him that I'm fine and then have a relapse he will be devastated.

Dr. Moore's Response:

Figuring out what's "normal" and what's too much of any behavior isn't easy. When I talk with parents who are concerned about particular behaviors, I try to get a clear picture of what the behavior looks like and how it affects the child's life. For instance, does your son beg to stay home from school or cry when he gets on the bus? Turn down invitations to play with friends because he wants to be with you? Or just spend more time snuggling at bedtime or a little more time than usual at home on weekends hanging out with you? How is the clinginess affecting his relationships with friends, with his father and other important adults, his schoolwork and his usual activities? The bigger the impact on any of those areas, and the more areas affected, the more I'd be concerned that a behavior is a problem.

It is very common for children to develop worries about both their parents' well-being after one parent is diagnosed with cancer, even when parents do their best to be reassuring. The fact that children worry about a parent's cancer doesn't mean that it's better to keep the diagnosis a secret-usually when children know the name of the illness, and feel they can ask questions and talk about the cancer, they are less anxious rather than more anxious. Kids are good at picking up on parents' worry, and without a clear explanation for it, may create their own explanations that are even worse than the reality.

To reassure a child, it helps to know in detail what a child's particular concerns are. They aren't always what we'd expect! Is your son worried that you will always be sick and fatigued? That his dad is at work too much so you aren't resting enough? That you might die from your cancer? Some children come right out with a long list of concerns, some require skillful probing before they share even one. If your son is reluctant to talk about his thoughts and feelings about your cancer, it might help to talk more generally about what he knows about cancer, whether he knows of other parents with cancer and how they are doing, how he thinks you got cancer, and whether he feels like he's hearing too much or too little about cancer from you. Through more general conversations, you might get clues about his particular concerns. He may also have an easier time talking with another adult you trust.

For many parents, "Are you going to die?" is the absolute most dreaded question their child can ask. Sometimes children wonder about it, but don't ask. I wonder if your son has voiced this concern? When talking about this, it is important to convey hope and optimism, but also not to make promises you can't keep. Since everyone's situation is unique, each parent's response has to be unique too, but might include the positive aspects of the situation, the plan of action, and a reassurance that if the situation changes, the child will be informed: "Will I die? Well, it's true that people sometimes die from the cancer I have, but my doctors tell me they can cure my cancer. It was caught really early, and now I'm taking medicine so I can be extra sure it's completely gone from my body. I'm planning to live a long, long time. If I hear anything different, I will talk to you about it." Or, "I have a tough kind of cancer to cure, but my doctors think I will live a long time...I'm going to do everything I can to get better so we can get back to doing all the things we enjoy together." It can help to remember that a child's sense of time is different than an adult's. When a child asks this question, they are often focused on the near future and not the long term. Sometimes reassuring a child that you certainly plan to be around for your trip to Florida next spring is enough.

If your treatments are showing signs of success, or if you're cancer free now, then by all means, share that with him! Let him know that the treatment is working, that you expect to be regaining your energy, or that treatment is over because the doctors don't see any more cancer in your body. Being truthful is important-a recurrence would be harder to talk about if you told him that the cancer was gone forever. Talk about all the ways you will continue to take care of yourself: eating well, exercising, not smoking, wearing a seatbelt, wearing a bike helmet, going for regular check-ups, getting mammograms, etc. It's true that relapses can be devastating, but there's probably nothing you can say now that would make the news any easier for your son should that occur. Focusing on the risk of a relapse in advance of it happening seems likely to heighten his anxiety without providing a clear benefit. If the cancer were to recur, at that point you can talk together about what worked well and not so well about how your family coped with it the first time around, and fine-tune your family's strategies.

Question One:

I am a 31-yrear-old stay-at-home Mom with breast cancer. I've had surgery and two rounds of chemo with four more to go and 30 days of radiation to look forward to. I have an 8 year old son and a 4 year old daughter. My son is a gentle spirit and almost always compliant. Since my diagnosis he gets very angry and cries a lot when I ask him to do his chores or anything that he doesn't want to do. He fights with his sister over little things and has begun being aggressive and will push or hit her. He also stands up and yells and will punch the couch or a pillow to show his anger. It really catches all of us off guard when it happens because it's out of his character.

My daughter acts the same as she did before but she used to wake up dry every night. After I went in the hospital for my surgery she started wetting the bed. It's been three months now and she is back in pull ups for bed. What can I do to help them? I know this is difficult for them and I have been completely honest about everything that is happening to me. When my hair started to fall out I even let them cut my hair so they wouldn't be frightened that I was going bald and they seemed to enjoy that and take it well. We have children's books about Mom's with cancer and they have journals. Am I missing something that I can do to help them? I feel so useless as a mom right now. Thank you for your help.

Holly

Dr. Moore's Response:

Dear Holly,

It's so hard to see our children's distress and be unsure about how to help, or have our best efforts seem to fail! It sounds like you have been open with your children about your breast cancer, its treatment, and the changes that come with treatment. When parents are comfortable with including their children, as you did around your hair loss, it usually helps children to be less frightened about changes.

It's common for kids to feel and act a bit differently when a parent is sick. You might ask if anything about the cancer makes them worried, sad or mad, and let them know that you feel that way about things sometimes too. Younger kids often have concrete concerns, like not being able to have friends over so much, or having more chores. It can help to just hear your child out, let him know you wish it were different too, and reassure him that it's not forever. You might also ask about why they think you got cancer. Preschoolers often feel that somehow they did something to cause it, like getting mad at you, or bumping into your chest too hard. School-age children sometimes blame themselves too, but more often feel upset about how unfair cancer is. Letting your kids know that no one else can catch cancer from you may be reassuring, too.

It's not clear how often your son is having angry outbursts, and whether they are a problem in other settings, but clearly you've noticed a change in his behavior. When he's not angry, you and his dad could talk with him about what you've noticed about his behavior, let him know that it's ok to be angry and frustrated, but that you want to help him do it safely. Explain that it's ok for him to punch a pillow, the couch, or rip up old phone books, for example, but not ok for him to hit his sister. If his anger or aggressive behavior continues to be a problem at home or becomes a problem with friends or at school, you might mention it to his pediatrician or the school counselor and find out what additional support is available for him.

Regression, or backsliding to an earlier developmental phase, is common for kids under stress, so it's not so surprising that your daughter is having a hard time staying dry at night even now. It might help to let her know that you're confident that she will soon start to wake up dry again, and to use the same strategy that worked when she first learned to do so: did you wake her up as you were going to bed? Reward dry nights? It might also be a good idea to check with her pediatrician to make sure there's no medical problem.

The demands of cancer treatment make keeping up the family schedule and routines much harder than usual, but doing so helps home feel familiar, safe and predictable. Let both kids know when you have appointments and how that will affect their day. When you can't be at home, try to enlist help from a small number of caregivers who know your kids well, and tell them in detail about the routines you have. Encourage both children to maintain activities and friendships, and enlist parents of their friends to help out with transportation, purchasing school supplies, etc. Finally, try to leave some time for your family to just enjoy usual activities, time that's not focused on cancer. It can be reassuring to everyone to feel that the good parts of life are going on, even in the face of illness.