How do you talk to your young child about this?

Fourminor · September 2014

I am on my second round of BC. The first one came before I was a mother. Since then, everything has a different lens.

My DCIS was found because i made sure to get a mammo before i tried to get pregnant so I would not wind up dead like one of my good friends did who got pregnant at 40. (I HATE THIS DISEASE!) Sure enough my plans to be a mom had to be put on hold. But I was so grateful that i was able to conceive easily and carry my son when I got the green light at age 42. However, the heartbreak started when I saw that my left breast was not responding to pregnancy hormones, i.e., enlarge or produce milk, even the nipple color never changed. I went through all of my surgery and radiation holding together pretty well, but knowing that I would not be able to feed my child with that breast was devastating to me. (As it was, I had a terrible time of breastfeeding because my nipples are flat and my son could not latch on, so my one good boob was getting wrecked and I couldn't switch off. I spent 6 weeks pumping on a spread sheet and exacerbating sleep loss when I finally realized i was not enjoying my baby and gave up). I have since spoken to multiple breast imagers and surgeons, asking why no one told me that would happen so I would be prepared and I have met with open mouths and shocked faces as they did not know it either.

Now my baby is 3 1/2 and I have a recurrence and am having a mastectomy in the next two weeks. He is so innocent and likes grabbing my breasts, putting his head on them, still wants to get in the bath with me. I admit this played a part of my decision to keep the good one. But when i think about trying to explain any of this to him, I face a pain that doesn't even occur when i think about myself. What have some of you done to prepare your children?

Moderators · September 2014

Hi Fourminor.

You'll sure get helpful responses from other members here, full of experience and knowledge. Until then we wanted to give you this link to the main Breastcancer.org site article called Talking to Young Children. We hope this helps. It's not easy, we know, but you're not alone.

Best wishes,

The Mods

Oncearunneralwaysarunner · September 2014

Hi Fourminor,

My daughter was 2 1/2 when I was diagnosed and we found what worked for us was to keep things really simple and give her just enough info as things were happening. I had chemo, surgery, then radiation.

When I had my port put it, she clearly saw the bandages and asked what it was and we simply said that "mommy has a little booboo and this is to help the booboo". We also reminded her not to touch it and for her to be gentle with me while it was healing. When I was going through chemo and felt like crap and all I did was sleep we would tell her that "mommy went to see the doctor for her booboo, and he gave her medicine but the medicine makes mommy feel yucky for a few days".

As for surgery, I had a lumpectomy and while she could not really see my bandages, we made sure to remind her that I had a booboo and that she needed to be gentle. We went over rules for behaving around me such as no climbing or jumping on mommy, and no leaning and pushing on my chest when I got home from surgery. She sees my scars now and asks what they are and I tell her that I had a a booboo and the doctor had to go fix it. She accepts that and doesn't really ask any thing more.

We did not really prepare her ahead of time. We didn't think she would quite understand the concept of what cancer is and we did not want to potentially scare her more than we needed to. We tried to keep her life and routine as normal and carefree as we could. We addressed things as they were happening. We also found that addressing things in a very matter of fact way worked well with her.

She's 3 1/2 now and while she is certainly more mature now, I think I would approach things in the same way with her.

BooblessBritt · October 2014

Hi fourminor,

I have a 4 year old and a 16 month old, and I will be having a double mastectomy on 10/9. Obviously, I do not have to explain anything to my baby, but my 4 year old will definitely notice the changes to my body. She is already aware that there is a lump in my body and that it is going to make mommy very sick, so the doctors need to take it out of my body. To get it out of my body, they're going to have to take my boobies off so mommy isn't going to have boobies for a while. That's pretty much exactly how I explained it to her. She did say, "Aww, I like your boobies." and gave them a little rub. I knew she understood when she explained it to one of my friends later that night. I do plan on having reconstruction, eventually, so I'll tackle that hurdle when the time comes.

Good luck,

BrittPro

Outfield · October 2014

Fourminor, I wish nobody had to go through this with little kids. My kids were 2 and 3 when I was diagnosed (stage III, had BMX/chemo/radiation). There were two things that were really helpful to me. The first was the wealth of books written for kids of moms with breast cancer. There are a TON. Those were key to helping my daughter verbalize her worries (and she definitely had them). We have about 7 of them - gifts, Amazon - and having a variety around was helpful because they each had strongpoints. The only book of that genre I would recommend against has the name "Tabitha" in the title. I hated it because the protagonist's husband was a total jerk throughout. The other thing that helped us was having a lot of pillows to cushion spots where I was tender. I could still cuddle, without worrying about hurting.

clarrn · October 2014

My daughter was 2.5 when I was diagnosed. I recommend the book 'mommy and the breast boo boo' if you are also getting chemo. It wasn't scary. The mom in the book had a lumpectomy but my daughter understood when I said the boo boo was too big. I am amazed at how much they understand. They really do echo us. I found if I was matter of fact and not conveying anxiety, she wasn't worried either. Good luck. Having little a little one at home does make this harder, but I don't think there is a wrong answer. You know and love your child and

Fourminor · October 2014

Thanks, I will look for those books.

I've brought it up a few times since surgery is this week. I told him i was going to be in the hospital and daddy and i would not come home until the next day and he asked me why, so i told him that the doctors had to take away one of my boobies because it was sick. He asked me if it had germs. I said no, it was a different kind of sick. He seemed OK with this, but I will check out the books because he needs to understand that mommy is not going to be herself for a little while.

clarrn · October 2014

oops... The book was mommy and the polka dot boo boo

clarrn · October 2014

http://rethinkbreastcancer.com/support-programs/su...

This site has a whole pdf book about this topic, wish I had seen it earlier!

Fourminor · November 2014

I started this topic, so I thought I would share the outcome thus far:

This the series of discussions I had with my son, who is 3 1/2. As background, he has always been particularly fixated on how things fit together and building things. He has also used the term, "boobie," for all of his young life. I chose not to use the word "cancer" and after the questions he had, I was glad to have omitted it.

1) Introduction.

Me: Mommy has a boo-boo in her boobie and I have to go to the hospital so they can take it off. Daddy is going to stay with me, and we will be home the next day.

L: Take off your boobie? Why?

Me: Because it has a boo-boo.

I thought this would be the end of the discussion, but it was just the beginning.

2) Home from the hospital.

L: The doctor take off your boobie?

Me: Yes.

L: Where it is?

(This caught me off guard, and I quickly thought, "how can I explain pathology department?")

Me: They are looking at it to see if they can fix it. Then they are making me a new one.

3) A week later:

L: The doctor makes you a new boobie?

Me: Yes.

L: How he do that?

(Damn, he did it to me again, how do I answer this?)

Me: He uses a balloon.

L: A BALLOON?

Me: Yes.

L: What color is it? Is it blue?

Me: You want me to have a blue boobie?

L: Yes.

4) A few days later.

L: You got a balloon to make a new boobie?

Me: Yes.

L: How it works?

(This seems like too much info for him at this point, but he is still asking questions so I want to keep answering until he is comfortable.)

Me: The doctor puts some water into it to fill it up.

L: How he do that?

(Seriously????)

Me: He uses a little tube to put the water in.

5) Two days ago, talking to his nanny. I just happened to overhear this.

L: Mommy got a boo-boo in her boobie and the doctor take it off. He put a balloon in to make a new one.

I hope he doesn't discuss this with his nursery school!

Lilith08 · November 2014

Fourminor, thanks for the update--that's a great series of discussions!

I haven't had any one-on-one conversations with my nieces yet, but so far they seem to be handling things well. They know that I had my boobs removed and they know that I don't have cancer, which seemed to be their bigger question. Nice to know, for kids who are 8 and 6! I think they only knew to ask about cancer because of Pinktober. The first time they saw me, two days out from surgery, the older one seemed a little hesitant about my appearance. I quickly explained that I was wearing a sort of tool belt that held my drains, and that's why my tummy looked funny. She said, "Oh! 'Cause you kinda look pregnant!" So I laughed and said that she's quite right, but that I'm not, and that I'd only have to wear that little tool belt/pouch for a week or two. I also had bought myself two bright-red heart-shaped pillows and would keep one held in front of my chest while they were around. They love the pillows and would like me to pass them along when I don't need them anymore. They were curious about why I was always holding the pillow, so I explained that I really only needed them when I was sleeping, but that they were also good to remind people not to bump into my chest as it would hurt. They seem ok with that.

I'm now two weeks out from surgery. I saw the kids again on about day 10--drains were already out, so I proudly told them I didn't have to wear my pouch/tool belt anymore, and lifted my shirt a bit to show them it was just my tummy. They are being very gentle--none of their usual exuberant hugging. That's perfect for now, but I can't wait to get to the point where I can hug wildly again And I'd like to hear from them about what's going on their heads, too.

How do you talk to your young child about this?

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