August 2000: Kids and Mom's Breast Cancer

What info is appropriate for certain ages?

Question from ICCHY: How much exactly should children know about the cancer a parent has? What age groups should or are capable of knowing what?

Answers —Joan Hermann, L.S.W.: I would say from about ages 3 and older, children need to be told very basic information—information like the name of the cancer (in this case, breast cancer); what will happen in terms of treatment; what Mom will experience; will it be chemotherapy, surgery, or radiation; and what side effects these treatments are going to have.

Marisa Weiss, M.D., Breastcancer.org president and founder: And also will she need to be in the hospital. It's also important to let your child know if you are going to start looking different.

Joan Hermann, L.S.W.: I think that the major issue for children is their own need for safety and security, so how will the family's life change as a result of what's happening? If Mom's in the hospital, who will pick the children up from school, who will cook dinner—basic things like that, so the child is reassured that mom is still taking care of them. The basic message is that you will be taken care of, no matter what happens. And that's universal for any age child.

Marisa Weiss, M.D., Breastcancer.org president and founder: When Mom is in the hospital, I think it's also really important for the child to know that Mom is being taken care of in the hospital. Many children think that bad things might happen to her in the hospital, because when she comes home she may look sick. She may go in looking well and come out looking sick.

Joan Hermann, L.S.W.: It's also a very good idea for somebody to let the child visit the hospital to see what their mom is experiencing. I think little kids can go into hospitals safely if they are prepared and the parent does not look terribly, terribly sick. Two and three-year-olds can visit the hospital if the mother has the energy for it and, of course, any child who goes into the hospital needs to be prepared for what they will see. So, nurses are often very helpful with that. What's that IV pole? Why does mommy have a Band-Aid on? Those kinds of questions.

Marisa Weiss, M.D., Breastcancer.org president and founder: There are so many simple things that you need to think about them seeing, like the IV pole and that stuff.

Joan Hermann, L.S.W.: But the message, again, is that the people in the hospital are taking care of Mom.

Important to appear normal for child?

Question from rooster: Does seeing mom bald traumatize a child? How important is it to appear 'normal'?

Answers —Joan Hermann, L.S.W.: Seeing a mother bald does not traumatize a child if they know that that's an expected side effect, and if everyone is prepared when it's going to happen. Mom can wear a turban, hat, wig or whatever, because being bald is a sign that the treatment is working. There is nothing wrong with mothers saying to their children. "This upsets me, too. I hate looking at myself in the mirror, but this is only temporary—my hair will grow back."

Marisa Weiss, M.D., Breastcancer.org president and founder: Some women I've taken care of have made a joke of their baldness. Their children have put temporary tattoos on their heads. They've done playful things like that, giving their children permission.

Joan Hermann, L.S.W.: The mother's attitude is enormously helpful. There may be times when mothers actually fake it, when they pretend that it's not as awful as it feels inside, so their children don't perceive it as a terrible thing that's happened. What I mean by that is that the woman may feel absolutely dreadful, but if she lets all her feelings become unleashed on the child, that can feel overwhelming to the child.

Child embarrassed, guilty and scared?

Question from momOfOne: I get embarrassed when my friends see my mom. She looks sick, is always on the couch, and is bald, and now I feel guilty because she could die and I cry.

Answers —Joan Hermann, L.S.W.: I think that it's a natural feeling that a child would have, to be embarrassed. It would be good if you were able to tell your mom how it makes you feel. You can say to her, "I feel so bad that you're so sick. When I see how sick you are, it makes me worry that things are not going to go well." So, I think the most help is if the child is able to say to their mom, "I get really scared when I see how you look." It would be good if you could find out from your mom why she looks the way she does.

Marisa Weiss, M.D., Breastcancer.org president and founder: It's very true, kids don't know how to differentiate between when you look washed–out because of treatment side effects, or if you look bad because the cancer has grown.

Daughter scared she will get breast cancer?

Question from mari: My 12-year-old daughter worries that she will have breast cancer because I had it. How do I respond?

Answers —Joan Hermann, L.S.W.: It's natural for a daughter to worry about that, especially as her breasts are still developing. Mothers need to tell their children that breast cancer in an adolescent is extremely rare. And that certainly there's a chance that anybody, as they get older, will develop the disease. But remember that there are advances being made every day in how breast cancer is treated. Even if a fifteen-year-old might get breast cancer twenty years from now, the treatment will be even better than it is today.

Marisa Weiss, M.D., Breastcancer.org president and founder: Girls need to learn how to enjoy their body and feel good about it and not feel threatened by it.

Joan Hermann, L.S.W.: The other issue that's a problem for kids is the question of why mommy got cancer to begin with. One of the most universal fears that children have is that they've caused the cancer to happen by something they did or something they didn't do, or one day they yelled, "I hate you, Mommy," or something like that. It's applicable to all ages. Younger children engage in magical thinking. They think that everything that happens in the world has something to do with them. So, this is a universal issue that parents should confront up front and not wait for the child to ask. After they've gone through naming the disease, what the treatment will be, and that Mom is going to the hospital, the next thing will be that the doctor has told us that nobody caused mommy to get sick; that's not possible.

Marisa Weiss, M.D., Breastcancer.org president and founder: Don't wait and wait and wait for your child's first question. If you're not talking—you're only waiting —your child is picking up the cue that you are uncomfortable talking about this and that may inhibit their question asking.

Joan Hermann, L.S.W.: There's something called the 'family protection syndrome' and everybody understands this—everybody in a family of people who love one another, everybody tries to protect each other from bad things. So, if a child is not asking any questions, that doesn't mean that they are not worried to bits inside.

Marisa Weiss, M.D., Breastcancer.org president and founder: A message we are hearing over and over again is help your children understand what to expect and give them permission to express their questions, uncomfortable feelings, and even anger.

Joan Hermann, L.S.W.: It's a natural human response to be angry that your whole world is upside down. Children need to be able to be mad that this has happened. Even if that's irrational, they need permission to be angry. That comes into play in situations when Mom can't pick them up at soccer practice and can't go to the school play. If the child is not expressing a reaction to that, the mother needs to reach for it by saying, "I know how upset this makes you—you may even be mad at me. This is nothing we have any control over right now. My first job for you is to get better, and as soon as I'm physically able, I'll start acting like your mommy again. But right now the treatment is really wearing me down."

Alleviate sons' fears of recurrence/death?

Question from sabra: I have 12- and 15-year-old boys. I was done with my treatment last January for a very aggressive breast cancer. What is the best way to alleviate their fears of a recurrence of my cancer and possibly leaving them without a mother?

Answer —Joan Hermann, L.S.W.: There isn't a good way to take away all of your children's worries about that. Mothers need to acknowledge it's possible their cancer will come back, and if that happens, "We'll deal with it, just like we've dealt with all we've been through. If the cancer comes back, I'll be treated again, but I'm fine now. As far as we can tell, the treatment looks like it has stopped the cancer. What we need to focus on right now is that I'm feeling OK. Our life is getting back to normal. If it comes back, we'll deal with it."

I'd like to recommend to all of the parents in this situation to get a copy of Dr. Wendy Harpham's book, When a Parent Has Cancer: A Guide To Caring for your Children New York: Harper Collins, 1997. She has a nice way of dealing with this issue of recurrence. The way she puts it is that she can't buy a ticket until she gets on the train, or I can't put a cast on an arm until it breaks. We can only deal with the present. We will deal with the future when it happens, if it happens.

How to convince mom to get a mammogram?

Question from momOfOne: My mom says she is too afraid to get a mammogram and won't get one. I am concerned for her. Any good suggestions to give a 16-year-old daughter who loves her a lot?

Answers —Joan Hermann, L.S.W.: It's a tough issue, because the teenager doesn't know what's holding her mother back. Is your mom worried because there's a family history of breast cancer? Has she already felt something suspicious that she's worried about? Is she afraid the mammogram will be painful? You would need to be prepared for your mom not being able to tell you what she's worried about, and I would encourage you to talk to your dad about it, or another relative or friend that your mom is close to, and see if your mom is able to share with either your dad or another relative or a close friend what she's so worried about, because she may not be able to tell you what that's all about.

Marisa Weiss, M.D., Breastcancer.org president and founder: Maybe if you offer to go with her to the mammogram and make it a nice time together, that may encourage her.

Joan Hermann, L.S.W.: But the other thing that a teen needs to know is that you don't have to take care of your mom and you are not responsible for her decisions. As worried as you are about your mom, you can't make her do something she doesn't want to do. Probably the most you might be able to do is say, "Mom, I'm worried about you—breast cancer is very common, and it really scares me that you won't go and get the test for whatever reason. Can you think about doing this for yourself and maybe a little bit for me? I'm worried about it."

Help for daughter to understand?

Question from kellie: My little girl says that she understands that I am sick, but I am not sure. I am afraid that she has some misunderstandings. How can I tell what she really understands?

Answers —Joan Hermann, L.S.W.: The most obvious first step is to try and get the child to tell you what she thinks is going on. You might say something like, "You know, we talked about my having breast cancer. I told you what was going to be happening, but I wonder what you think about all of that. It's important for me to know if you're worried or if there's something you're scared to ask me about. I will always tell you the truth, no matter what your questions are. I will always explain it to you."

Marisa Weiss, M.D., Breastcancer.org president and founder: You can also say, "If you ask something I don't know, I will try to find the answer for you."

Joan Hermann, L.S.W.: Depending on the age of the child, you might want to say, "Sometimes kids are afraid to ask about something that really bothers them, but it's important for me to know what you think, so I can be sure that you understand what's going on. And nothing's too scary to talk about." Find out their thoughts and fears—Try to get your children to tell you what they think might happen. Try asking, "Do you ever worry that the treatment might not be helpful?" This way, you have some sense about your children's understanding of the situation and what kind of reassurance they need.

Best way to break cancer news? Analogies?

Question from Doris: What is the best way to break the cancer news to the children? Are there good analogies for young children? (i.e., it's like an alien has entered my body and is doing damage?)

Answers —Joan Hermann, L.S.W.: It's very much dependent on the age. The family should be together when this conversation happens. The mom needs to say that the doctors have told her that she has cancer in her breast and she can point to the part of her body where that is, and say, "I'll be taking treatments to get rid of this thing that shouldn't be in my body." Then, explain what the treatments are going to be, what the side effects will be, and how the child's world is going to change at least temporarily.

Marisa Weiss, M.D., Breastcancer.org president and founder: I would tend not to use an alien description because they may fear that the alien could enter everyone else's body, and the idea of a monster inside Mommy is very scary.

Joan Hermann, L.S.W.: The other thing, regardless of the age, is that nobody can catch cancer from somebody else, and a lot of times doctors can't really tell people why somebody has gotten cancer.

Marisa Weiss, M.D., Breastcancer.org president and founder: Just after a breast cancer is diagnosed, the adult should avoid whispering together anywhere near the children. The children become very uncomfortable and worried that something terrible is wrong, that something much worse is happening.

Joan Hermann, L.S.W.: Children need to know that their parents will be straight and honest with them. "I'm telling you all that I know right now. If anything changes, I promise I will tell you."

Help for teens to deal with serious cancer?

Question from hawaii: What help is there for a 14-year-old female and 17-year-old male (brother and sister) to deal with their mother's recently diagnosed Stage 3 breast cancer with 11-node involvement?

Answers —Marisa Weiss, M.D., Breastcancer.org president and founder: Mom can say that the doctors have told her that she has a cancer in the breast that is a serious one. They've reassured her that they have treatment for her, that she will put up a serious fight against this problem.

Joan Hermann, L.S.W.: "I'm going to do my darnedest to get better. I'm going to work very hard to beat this thing. And I'll need your help to do that."

Marisa Weiss, M.D., Breastcancer.org president and founder: This is an opportunity to tell the children that this 'serious treatment' may be strong stuff, and that there are times that Mom's going to feel wiped out, and may just hang around and not feel like doing very much, but that these side effects are temporary.

Joan Hermann, L.S.W.: Mothers certainly can say this situation is serious, but they don't need to share with their children everything that they are worried about. At this kind of a diagnosis, the mom may feel very panicked and frightened, but she needs to project a very positive "I'm going to do everything I can to beat this." That's not to say that the mother can't say. "I'm scared, I'm worried," but she doesn't need to dump that on the children, because the children need to go on with their lives, to do all the things that kids do. The mother should reassure the children. "I will tell you if things get worse. Just help me get through this thing. And I'll tell you if something changes—I promise you that."

Should the children see the surgical scars?

Question from fran: My children want to see my surgical scars. I've been avoiding showing them, yet I have to ask them for help in lifting things and doing regular chores. How should I handle these situations?

Answers —Marisa Weiss, M.D., Breastcancer.org president and founder: If you were used to being naked in front of your children before your diagnosis, then you should look for the time to ease into that normal pattern. It's very important to let your child know what your body looks like before they actually see it. Please look at the reconstruction pictures in our Picture of Treatment Section, as well as the pictures of surgery. Once again, helping your child understand what to expect will make this adjustment to seeing you naked again much easier.

Joan Hermann, L.S.W.: It's important, as we said before, that a mother should do what is comfortable for her, what she is used to in that regard.

Marisa Weiss, M.D., Breastcancer.org president and founder: If you did not show your children your naked body before, then now is not the time for doing it. And be sure you ask the child why they want to see it. What are they imagining is there? What are they scared of?

Explain reconstruction to adolescent girl?

Question from Karla: I have finished chemo and radiation treatment. I have begun the breast reconstruction process. Are there any issues unique to my 13-year-old adolescent girl?

Answers —Joan Hermann, L.S.W.: I think moms should explain to their 13-year-olds that some women want reconstruction so that they can kind of feel whole again, while to others it doesn't really matter. "I've decided I need to do this for myself, so I can feel like me again."

Marisa Weiss, M.D., Breastcancer.org president and founder: You may also suggest to your daughter that you think it would be fun if she went out shopping for underwear with you. Again, look for opportunities to have fun, to balance out these serious conversations. Tonight, we are talking about many tough issues, but there really is room for growth in your relationship with your children that can be a very special, meaningful, and joyous experience.

Preparing child's school staff for experience?

Question from adrienne: How do you prepare your child's teacher, principal, and school staff, about what's happening to you, and how your child is dealing with it?

Answer —Joan Hermann, L.S.W.: In general, it would be very good if parents can tell either the teacher or a guidance counselor what's going on at home. Some women feel that this is a very private experience that they don't want a lot of other people knowing about, but try to think about the school as one of your allies. If the school knows exactly whatever information you are comfortable sharing, then the school is more likely to have a meaningful relationship with you on how your child is doing. When children are upset, that usually manifests itself at home and in school, so the teacher needs to know in order to be able to help your child deal with whatever comes up in the classroom. The other thing that can happen is that other children will find out that the mother has cancer and that can come up in the classroom. That's another argument for including the school to whatever level the mother is comfortable about what's happening.

Dad's role in helping kids understand?

Question from DianeNY: We have talked a lot about Mom and the kids. How about Dad? What role does Dad have in helping the children understand?

Answer —Joan Hermann, L.S.W.: Fathers will obviously be taking over some responsibilities that are typically the moms', and they need an outlet for how this experience is affecting them. Dads don't need to be a tower of strength. Mothers and fathers should try to talk to their kids together about what's going on.

Suggestions for kids that are worried sick?

Question from Fairguest: I am a 19-year-old male and my sister and I have a mom who has cancer, and we feel like we are now going to lose her. I have nightmares and my sister is now throwing up a lot. Any suggestions?

Answers —Joan Hermann, L.S.W.: It would be good if you could tell your mom or your dad what you're worried about. And check out whether this is a realistic worry. What is it that makes you think you're going to lose your mom? If you and your mom haven't been able to discuss this openly, you might ask for another relative's help to start the conversation going, but the important thing is that your mom needs to know how you're feeling, and talking about it isn't going to make it happen. If you were to say to your mom, "I'm really scared about what's going to happen in the future," that doesn't mean your mom is going to die. If you can't talk to your mom or another relative, you might want to say to your mom that you want to talk to the hospital social worker about a support group you could join.

Marisa Weiss, M.D., Breastcancer.org president and founder: Your sister's anxiety, leading to her vomiting, needs to be addressed. She needs to be assisted by a nurturing, capable, and supportive person in her life.

Joan Hermann, L.S.W.: It might be good to start with the family doctor, and that may need to be addressed in terms of what's physically going on, too. The son could say to their mom, "I'm really worried about my sister's throwing up. Is there somebody at the hospital she could talk to about what she's feeling?"

Okay for child to go to support group too?

Question from lizzygirl: My mom goes to a support group now that she is in chemo. I've told her I'd like to go with her. I'm 10. She doesn't want me to. Am I wrong in wanting to go? If not, what could I say to her?

Answers —Joan Hermann, L.S.W.: The child needs to know that the support group that Mom goes to is for other patients, and that she probably wouldn't feel really comfortable being in a room with a lot of women talking about their breast cancer. I would suggest that the mom talk to the hospital social worker or the oncology team about whether there are groups available for children whose parents are sick. These groups are much more common than they were before.

Marisa Weiss, M.D., Breastcancer.org president and founder: If your mother doesn't bring you to the support group there may be other places that she can include you easily, like bringing you to chemotherapy or the radiation department, or a follow-up examination. It's so nice and supportive of you to want to help your mother in this way.

Inform child of possibility of death?

Question from Georgetown: What is the best way to inform a child of the concept of death and how it may relate to a parent as a possibility?

Answer —Joan Hermann, L.S.W.: If a mother is really worried that she is going to die, the child needs preparation for that. This may not be a conversation that the mother is able to have, so she shouldn't beat up on herself if she isn't able to say to the child that she is going to die. She might want to say something like, "The doctors are worried that the medicines aren't working as well as they did before, and I'm really worried about what's going to happen next." And then ask the child what she's worried about. "Do you sometimes worry that the treatment isn't working, or that I'm not going to make it?" That would be for children five years old and up. It's different depending on how much information the child can absorb, but even a five-year-old needs to know that things are not going well. The mother needs to say, "I'm doing everything I can to beat this thing, but if the worst happens, you will always be taken care of. I don't want to ever have to leave you and I'm still going to try my best to be here for you. But if the worst happens, you will be taken care of." Again, get Wendy Harphan's book, "When a Parent Has Cancer —A Guide to Caring for Your Children." Children will obviously be very upset at the possibility of your death, but they can find ways to go on. Mothers need to know that they have left a large part of themselves in their children, and it is possible for your children to grieve for you and then to move on and live their lives in a productive way. This doesn't need to destroy them.

Breast cancer triggers issues in teen years?

Question from LC: What issues do you think may be triggered during adolescence for a son whose mother had breast cancer when he was very young?

Answers —Joan Hermann, L.S.W.: If the mother is well and this experience is well behind the family, there's probably not much to worry about. The son, as he gets older, may be more sensitive. If he gets married —if he has relationships with women—he might be more sensitive to health issues, but I wouldn't expect any long term negative stuff.

Marisa Weiss, M.D., Breastcancer.org president and founder: Adolescence can be a difficult time for boys and girls, and this is a time when they may need their moms the most. And at those times, they may feel a little bit vulnerable if Mom's health is in question.

Professional counseling for loss of parent?

Question from susan: Do you think a child who has lost or is losing a parent should get professional counseling?

Answer —Joan Hermann, L.S.W.: I think it totally depends on how the family has dealt with it up till now. It might be more important for the parent to be talking to somebody so they have the energy and the confidence to reach out to their children, because if the parent is able, the parent is in the best position to be able to help their kids. So it doesn't necessarily call for professional counseling. If the mother is worried that the child isn't doing OK, she can ask for counseling. But just the mere fact that they may lose her doesn't necessarily mean that the children need professional help. When in doubt, go for an evaluation.

Additional thoughts on breast cancer and kids?

Question from mary: Thank you so much for being here tonight and for sharing your experience and advice. What are your final thoughts?

Answers —Joan Hermann, L.S.W.: I think it's important to realize that you're going to do the very best you can for your children. This experience will certainly have its ups and downs, and there may be times when you're terribly worried or anxious about your ability to help your kids. Most parents intuitively know what their children need and will do the best they can to get over the rough spots. If you feel that you're having difficulty handling this situation, think about getting some help for yourself, so that you'll be in a better position to help your children make sense out of this experience.

Marisa Weiss, M.D., Breastcancer.org president and founder: Spending time together doing the usual routine can be very reassuring. It can provide the best atmosphere for inviting open expression of concerns and hopes.