How to explain Mastectomy to a child?? Help!

jenlee · March 2012

After my diagnosis, my husband and I explained the chemo to my eight year old daughter. Wanted to tread VERY gently because two years ago, her classmate's mom passed away from breast cancer. So we made a lot of effort to talk about survivors and to provide lots of examples. But we figured we'd take it one step at a time. So my BMX is scheduled for late May and I have NO idea how to even begin that conversation. Before chemo, before I decided to take the most aggressive route, we explained about taking out "the marble," of cancer (even though it was more like a golf ball. She may think that the chemo was in place of the surgery and if so, we probably haven't handled this appropriately, but just wanted to take it one step at a time with her and not have her thinking about the surgery for months.

In any event, I have to figure out a way to explain why mommy is having her breasts removed. Keeping in mind that she's going to want to know why there has to be surgery after the chemo. (And keeping in mind that her friend's mom died of breast cancer.) Then there's the whole post surgical thing with the drains, etc. We're very close, she's in and out of my bedroom all the time while I'm changing and sometimes in the shower with me, and often sleeps with me. Obviously, it's going to be a big change for her that I'm going to need lots of privacy for quite a while during reconstruction, and maybe from now on... I know there is a childrens' book about mommy having a mastectomy, I think written by someone here and it gets really good reviews, though I think there is mention of fear & death -- maybe I could tear those pages out.

I'd appreciate any experience that others have had with this, as well as any thoughts in general. There are many wise women here, so you don't necessarily have to have experienced this situation to have intelligent advice.

Laurie08 · March 2012

My sons were younger, and I did not have to have chemo- but for whatit's worth.... I kept it simple. I told my older son, 3 at the time that Ihad a boo boo in my chest and the doctor was going to take it out so I wouldn't get sick . I couldn't lift him etc for 6 weeks. When I tried to hide things from him he acted afraid, when I talked to him about it he was ok. He came and saw me after my BMX surgery and was great, he was great for the whole thing. I hid the drains from him, it's actually easy to do with the MX bras and the pockets. He sees me naked more than anyone else and he didn't even notice my nipples were gone, or that I was flat etc.

My biggest advice, keep it simple, tell the truth on a child level and stand tall, if you are afraid they will feel it. Otherwise it is just something temporary and no big deal. (like it's no big deal!) But you know what I mean. Where your child is older I might even tell her of the drains, what they do and then they are gone. It's when you hide something, or act afraid that they are afraid.

I hope this helps, good luck to you and hugs, it sucks,

chrissyb · March 2012

Jenlee perhaps if you explained it by saying that you never want it to return and after speaking to your doctor he has suggested as an insurance against that it is a good idea to have your breasts removed and after thinking about it you agree with him/her. It does mean a short stay in hospital and an operation but you are going to be just fine and the surgeon will definitely look after you.

These children are brighter than we think and think a lot deeper than we as adults often give them credit for. The main thing is to be as honest as possible while keeping the language at an eight year olds understanding level.

My grandchildren were living with me as their prime carer when I was Dx'd. One was five the other seven and I explained the process in much the same way. I sure hope it helps a little.

Love n hugs. Chrissy

Kadia · March 2012

Hi, I have an 8 year old son. I had a UMX and am currently going through chemo. We used simple, age-appropriate but accurate terms and always had an upbeat, optimistic attitude when discussing the cancer with him.

Initially, we talked about my having a lump that needed to be taken out, and that the lump was called cancer. We said I had to have surgery to remove my breast to be sure they got the whole lump. My son still occasionally sees me naked, so he has seen the "foob" and really didn't say anything about it. I offered to show him my drains when they were in; at first he didnt want to see them, but eventually he got curious so I showed him. Again, my attitude was to normalize it all as much as possible and not try to hide or tiptoe around stuff (which I believe kids sense and get more frightened by).

Now that I am going through chemo, we told him that it is possible that some cells came off my lump and may have gone elsewhere in my body, so I have to take medicine that chases down those bad cells and gets rid of them. We've told him about the side effects as they've come up (they have not been too bad so far).

Now and then, we ask if he has any questions about the cancer (he rarely does). Obviously, knowing someone who died from cancer will likely make it scarier for all of you--but maybe not as much as you think, especially if your attitude is positive. She may ask if you are going to die, so you will probably need to be prepared to answer that. I wondered if my son was going to ask me that, and decided that given my dx (similar to yours) and aggressive treatment, I would tell him that because I was getting good treatment, I was going to be fine. I see nothing wrong with offering this kind of assurance to a child that age, since it is most likely true.

EDITED to add: i do think it's key that there is a general congruence between what you say and what you actually feel. Kids can tell early on if they are being lied to, and that can cause extreme stress. If you don't feel optimistic, it will be hard to feign it to a believable degree, in which case an "im doing everything I can to be well" answer might be the better one. I choose to say I will be fine because I truly believe it, and if it turns out not to be the case, we will deal with it then. I personally feel that my child is too young to bear the burden of wondering if I will die any more than he has to.

Outfield · March 2012

Hi,

My son was 2 and my daughter 3 when I was diagnosed. My son was at such a self-centered stage it didn't phase him much, but my daughter really had a hard time during my treatment.

I never tried to hide anything from her. I tried to present things in simple terms, and let her know just a little ahead of time when something like surgery or a chemo infusion was going to happen. My hope was that by doing it that way she wouldn't feel betrayed or like she'd been lied to, but she also wouldn't have too long to stew about it in her head and get more anxious. There are actually a TON of kids books written for children of moms with cancer, usually (but not always) breast cancer. We read them all, and it it was really good for us to have book after book mentioning cancer. I think it normalized things for her, since we didn't at the time have any friends where there was a kid and a mom with cancer in the family (sad to say, we do now). Of all the books, and we read maybe 12 of them, there was only one I didn't like, the title was something like "Tickles Tabitha" and we didn't like it because the dad/husband was an insensitive jerk.

I don't hide my chest from my kids. I did when I had bloody bandages, but that stage doesn't last long. It was easy enough just to say I was very sore and needed to keep my chest covered. I did not have reconstruction and really don't know what TE's look like, but I'm not in general ashamed of my body and chest, pre- or post- breasts. My kids nursed until quite late so they knew and touched my breasts before my diagnosis, and they know and touch my chest now. I think keeping it casual and not off-limits helps make it a normal, acceptable thing for them.

Chrissy is right about kids being brighter than what we think . Kids are amazing in what they can figure out, and mine are much younger than yours. When she was 4, my daughter and I were talking about where her grandmas live (far away). She told me she wanted me to live nearby when she has kids. There was a pause, and I thought to myself "Oh, I so much want to live long enough to be a grandma." Then she said, "I don't want you to die of cancer." I was floored that her 4 year old mind had taken the same track as mine. I am sure, if your daughter had a friend whose mom died, then your daughter has already worried about you dying. I can't lie to my kids and tell them I won't, but I do tell them that I don't want to die from cancer, and that I am doing everything I can to keep it from happening. I am very glad they are comfortable enough to ask about it when something comes up for them.

I know we want our kids not to worry. But life can be hard, and much as we want to protect them from life, we can't. My hope is that we give them the support and the tools to deal with fear and sadness and anger as best they can.

Good luck with your surgery.

Kadia · March 2012

I keep thinking about your situation. It's so tough to know what to do, how much to protect, how much information to give. Another thing I think is critical is to know your child and her anxiety levels. I was a very anxious child, and needed lots of confidence and positivity from my family, or else I would tend to get lost in worry. Other kids seem to weather uncertainty and fears in a much more resilient way. You know your child best, and probably have an idea about how much information, and how much protection, is best for her.

jenn333 · March 2012

I'm a mom of a soon to be 8yo daughter too.

I didn't have chemo so the realities of my treatment have largely not been obvious to her. I explained when I had my UMX that I had to have an operation on my chest to get rid of some bad cells. She took that at face value and really didn't ask any questions or appear otherwise too concerned. (I did have two major surgeries in 2010 - hip resurfacing - so she's kind of a veteran when it comes to mom's operations though. I'm sure that helped.)

A few weeks after surgery when she came into my room when I was just out of the shower wearing a towel she did ask to see where I had my operation and I showed her. I had immediate DIEP reconstruction so she saw the newly reconstructed breast mound with the round circle instead of the nipple where the skin was transferred from the abdomen. She told me it looked gross, LOL. She wants to know when I'm going to have the red bit put back.

As you can tell, I'm basically taking my cue from her. If she asks me any details about why I had to have a MX I will tell her, along with anything else she wants to know, but I don't intend to volunteer information that she doesn't ask for. Kind of like the sex talk, I guess. I'll give her information as she asks for it. Your situation may be different in that your daughter is aware of what BC is having had a friend's mother die from it.

Good luck!

jenlee · March 2012

jenn3333, I've already been anticipating the "that's gross" comment -- those eight years olds often think alike:) And at that age, they are very well aware of the human body and what it "should" look like in their eyes. I like what you said about explaining what's going to happen & why (once I come up with the right wording for that), then taking cues from her. Based upon past experience with some stressful situations, she'll usually that she'll ask for more information if she wants it.

Thank you all so much for the input so far & EACH response is inspiring me and I look forward to receiving more. She's an anxious child, but yet somehow resilient at the same time. We are so blessed to have adopted her. Though early on, with the assistance of a therapist who specialized in working with adopted children, we dealt with issues PTSD/anger/severe anxiety related to her abandonment & institutionalization. She's come so far since those days, but some underlying anxiety remains. She still sleeps with me a lot and has more fears than the average kid her age.

With the chemo, we gave her a true explanation, then she asked if we could not talk about it any more because it made her worry to much. We agreed, on the condition that she would let us know if she had any questions. She has had just a few along the way. Believe it or not, I was afraid she'd reject me when she saw my bald hear, because she had expressed concern about the hair loss and wanted to make sure I'd wear a wig. I should have given her more credit, as she surprised us and the day after my head was shaved, she wanted her long beautiful hair shaved off so she could be like me I've managed to be pretty upbeat with my family-- though she knows I can't wait 'til chemo is over! Hopefully, I can remain postive about the BMX as I know it brings me closer to being cancer free.

Kicks · March 2012

I believe that it is best to give the least info to get them thinking. Then they can ask the questions they have and you can give age-appropriate answers to those questions - not over load with info that is only going to scare them as they don't understand 'adult words' sometimes. I much rather give G-daughter (she was 8 when I was DX'd) just enough info for her to think about and come up with what she wants to know than to give too much and scare her. But then she's never had a problem asking me all sorts of question (some of them I've had to ask exactly what she was talkning about before answering them).

crystalphm · March 2012

I just want to post what a 5 year old child said about her mom. (my friend).

They were swimming in a pool together and the child asked (again) mommy, where are your boobies? And without waiting for a response the child said "Oh! I remember, the good doctor took out the bad part so you can be here to love me for a very long time".

I just think the child figured out the easiest answer.

As a preschool teacher, trust me, kids know when something is being hidden from them, or if they are lied to. So we tell them bits of the truth according to what their age can handle.

TifJ · March 2012

I tried to hide it at first from my then 8 year old son. He knew something was up and told his Grandma something was wrong with me and he was scared. I then sat him down and said- Mommy has some bad cells in here (pointed to my breast) and the doctor is going to take off my breast and make me a new one. I will have surgery and it will take me awhile to get back feeling good. Then I will have medicine to help keep the bad cells away. It will make me feel yucky and the worst thing is I will lose my hair for awhile. His mouth fell open with that and then he asked me if I was going to wear a wig and I said yes. He then asked if I could get a pink one! We laughed and that was the end of our conversation. I did tell him that I was not going to die ( I figured he didn't need to know that it could be a possiblility someday). He was very relieved and has been great ever since.

I hope all goes well for you and that your daughter understands and takes it well.

CoolBreeze · March 2012

I would just say, "As you know, I had chemo to kill any cancer cells in my body, and now I am going to remove my breasts so that any cells that might be left will have no place to grow. I know your friend's mom died of breast cancer and that's very sad, but I am doing everything I can to get healthy and my doctors are taking very good care of me and they think I will do fine. Most women who had cancer live long lives, and I am going to be one of them." Then I would discuss the details of the surgery - how you might need help carrying things, etc. Make him feel like he can help you.

I think telling them the truth in an age appropriate way is the only way to go. Like Tif said above, kids are extremely asute about something going on in the home and you don't want him to worry and make it worse in his head than it is.

I also think the most positive spin you can do is the way to go. They don't need to know that it's possible that cancer will return. People without cancer tell their kids "Mommy is going to be around until she's an old lady" not, "Well, Mommy might live to be old but Mommy might get hit by a bus tomorrow too." I think a positive, "I will survive" spin on it for an 8 year old is important.

If it does came back (and I hope it doesn't) you can deal with it then, and your child will be older and more able to understand.

The hardest part about this entire disease is what happens with your kids. Telling my son I was terminal was rough but I did tell him about all the women who do live many years and that I planned to be one of them. They need to know what is going on but in the most positive way you can muster.

Good luck.

sundermom · March 2012

I'm a mom to five kids that ranged in age from 10 to 3 when I was diagnosed. I also work as an elementary principal. I think taking your cues from the kids is important. Some kids want lots of information. Others don't ask any questions. I had a BMX with TE reconstruction, chemo and then rads. I think personally my kids had a tougher time dealing with the chemo because I lost my hair. I wore only scarves so it was something everyone talked about. As far as the surgery, I told them I had the surgery so the doctor could take the cancer AKA bad stuff out. I left it as simple as that until they asked more probing questions. They knew about the drains because they had to be careful hugging me, but I pretty much kept them concealed in their presence. They knew that I was being rebuilt, but only recently have my daughters seen my new breasts. My middle daughter (6) said, "so the doctor put balloons where your boobs used to be???" LOL Kids are amazingly resilient, but school personnel are also a great resource.

jenlee · April 2012

I ordered the book "when my mommy had a mastectomy." I think it will be very helpful. Also printed out all of your responses for my husband to read. I figure he can take the lead, since I've carried most of the burden so far, it's the least he can do! Thanks so much for your suggestions!

jenlee · April 2012

I wanted to mention that we ordered "When Mommy Had a Mastectomy" and it's a pretty good book, appropriate for pretty much any age child. It explains the whole part about mom mom needs surgery, staying in the hospital a few nights, etc. Also about mommy being in pain for a while, having to be gentle with her, and only soft gentle hugs for a while; even suggests finding clever new hugs like elbow hugs, toe hugs, pinky hugs. (One thing that my daughter and I have always done is hand squeezes. When we're walking along holding hands, sometimes we squeeze each others hands -- three squeezes is code for "I-LOVE-YOU.") Mentions how you can tell the kids how they can be helpful, by bringing you a drink, drawing you a picture, being quiet if you need to rest, etc. In addition, it mentions that some women have reconstruction, some women wear little pillows in their bras, and some choose not too. The book was written in 2005, and implies that there is somewhat long recovery, which some of the women here don't seem to be having, but then again, some do. Of course, like most books, there are certain sentences that might not apply to your situation, but especially with really young children, you can change the story a bit and they won't know the difference.

My husband had a decent idea for when we talk to my daughter about the surgery. That is, (since I'm having reconstruction), that the doctor is removing the Inside of my breast and will be putting something soft back inside to fill it back up. (To me, that sounds a little gentler than removing or cutting off the breast.) And when I have my clothes on, I doubt anyone will notice. My daughter is very conscious about fitting in at school, so I think that knowing that it won't be very obvious to others will be a comfort to her. I also know of several other parents and teachers who have had some form of BC surgery. So when I tell her that there are other women at her school who've had it and I bet she can't even tell, this will make her happy. Around the time of my diagnosis, two of the women had told me that I should tell my daughter that they had breast cancer years before, so she could see that women she knew and saw often were doing just fine (thank goodness we did have some positive examples, since there was the one mother who died of BC, which traumatized a lot of the kids.)

How to explain Mastectomy to a child?? Help!

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