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Topic: Did you use the word cancer with your kid(s)?

Forum: Family Matters —

A comforting place to discuss parenting children, or issues with partners, siblings, or parents following a diagnosis.

Posted on: Jun 27, 2017 12:27AM

marycal wrote:

Hi friends -

I have a daughter who will be 5 in about a month. I am currently trying to figure out how/what I will tell her. I'm pretty sure I know most of what I'm going to say, but I'm really stuck about using the word cancer. I believe I have gotten super lucky, and unless my oncotype comes back high, I will not need chemotherapy. However, I do need more surgery, and it is likely that it will be a mastectomy. For the lumpectomy, I just told her that my breast was hurting and the doctors were going to go in and fix it, and it will all be fine. Although this will be a big surgery, I will then be done (as far as she will know); she will not have to see me going through chemo.

She's very smart, and I know kids are very perceptive, so I want to be as honest as possible (we are a very open and honest family anyway). I will be pretty detailed (age-appropriate) with the surgery and what I'll be like afterwards, but do I have to say "cancer"? I know the word is loaded for me/adults, and not necessarily for her, but I do know that going forward, she will passively hear about cancer - through people's conversations, ads on the radio, etc. She will pick up on the associations that we adults have for that word, and I just don't know if she, as 5 year old, needs to be that worried and scared about it yet.

My family and close friends are split on the decision, and I'm conflicted. I am trying to protect her. I don't want this to be more scary than it will already be. I would rather be the one to manage when she fully understands it, but I am just not convinced that it has to be at her age.

What do you think? What did you say to your young child?

Thank you. :)

LX did not get clean margins on DCIS. MX showed DCIS scattered throughout and also LCIS. Dx 5/26/2017, DCIS, Left, 3cm, Stage 0, Grade 2, ER+/PR+ Dx 5/26/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Lumpectomy: Left; Lymph node removal: Sentinel
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Jun 27, 2017 12:33AM wrenn wrote:

I understand your fears. My daughter was 26 and I still didn't want to tell her.

If your daughter hears it from someone else she may fear the word more knowing you didn't mention it. It might be good for her to not attach such fear to the word and hear that it is a disease that can be treated? Being a coward myself I would be tempted to lie but you know what she can handle.

Sorry this is a dilemma you are faced with. Not fair.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 11/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 27, 2017 12:53PM NotVeryBrave wrote:

My kids were older - 15, 13, and 10. I did use the word "cancer" with them. I didn't want them to hear it later and worry.

I think that these days there is so much information everywhere. I'm glad that my children's understanding of cancer is that, while it can be scary, it is often a treatable condition. They don't have my knowledge base of a history of family cancers that didn't end well.


TCHP x 6 rounds - Complete Pathological Response! Still have to finish the year of Herceptin ... Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/19/2016 Perjeta (pertuzumab) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 27, 2017 03:44PM Lula73 wrote:

my boys are 22 & 12. We waited until we had a clear plan and then told them. With the younger one we explained that I when I went for my checkup the dr found a clump of cells that were not doing their job right and when that happens they call it cancer. Then we followed up with it was caught early and that's very good and then laid out the plan what he couldexpect, we also encouraged him to ask any questions no matter how scary whenever he needed to.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 27, 2017 04:32PM - edited Jun 27, 2017 04:34PM by mustlovepoodles

You know, I was poised to say no, don't use the word cancer. But then I remembered when I had a miscarriage some years back. We hadn't even told my 4yo that I was pregnant, let alone that I had lost the baby. One day he told me he felt sad and he wanted to go to heaven to see his sister that died. I was utterly shocked that he had figured it out. And sad that I hadn't been more open about it. I'm sure he overheard adult conversations. What a terrible way for a child to learn bad news.

Your child will take her cues from you. If you can manage to contain your fears and project strength and perseverance, she will not be afraid. You can tell her you have cancer, but the doctor is going to take it away. Tell her that you might feel bad for a few days, but then you will be all better. Which as far as you know is the absolute truth. If you end up needing chemo, you can deal with that later.

Oh, and there is a Berenstain Bears book about getting an operation. "Madeleine" is also a good one.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/19/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/3/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Jun 27, 2017 09:24PM - edited Jun 27, 2017 09:26PM by Falconer

I have three children- 18, 15, and 4. I was diagnosed almost one year ago. I told my older children that I had breast cancer and most everything. But our little one just knew that mommy had to have an operation and would have lots of boo boo's. I also let his pre-k teacher know what was happening in case he seemed worried (he didn't!). When I came home from the hospital he did offer me his favorite blanket to sleep with so I would feel better. I don't know why you'd need to say cancer if it feels too loaded and heavy. I understand feeling that way.

Strong is the new strong. Dx at 45. Onco 16. Monthly Lupron shots. Dx 7/2016, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 5/29/2017 Reconstruction (left): DIEP flap Surgery Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Aromasin (exemestane), Femara (letrozole)
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Jun 27, 2017 11:24PM meg2016 wrote:

I had a wonderful Social Worker who talked to us about how to tell my kids (8 and 11 at diagnosis.) Is that available where you are being treated? It was super helpful, we got some kids books and other tools to use to talk to them about it. We did use the word cancer, partly because we didn't want them to hear it elsewhere, or feel like we had "lied" to them when they find out when they are older. There are a few questions its great to be prepared to answer that most kids really want to know. Like "Can I catch it?" "Will you lose your hair?" And "Are you going to die?" Other things you might be prepared with is any impact this will have on their daily lives (i.e. grandma or a friend may be picking you up from school while I am getting better.) This website is helpful www.someoneiloveissick.com .

Diagnosed 3/4/16 at age 39; 2cm, Stage IIIA, Grade 3, 6/11 nodes, ER+/PR+, HER2+ , THP+AC, DMX with expander placement, Radiation, Aromasin
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Jun 28, 2017 05:59AM gb2115 wrote:

I have a 4 year old. We haven't completely avoided using the word cancer around her, BUT we probably didn't use it for a few months. We called it mommy's boo-boo. I still call it that in conversation with her.

We had a reason though. The cat was diagnosed with cancer about a month before I was so she got a lot of conversation about how the cat would die...not about to follow that up with Mommy has cancer!??

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen.
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Jun 28, 2017 07:16AM - edited Jun 28, 2017 07:16AM by Moderators

marycal, in addition to the wonderful advice and personal experiences you've received from other members here, you may want to take a look at the article Talking To Young Children About Breast Cancer, from our main site.

We know it's not easy, but hope this helps!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 28, 2017 08:19AM KB870 wrote:

mustlovepoodles your story struck a chord with me. I used to work in the lab of a cancer and terminal care hospital in the UK. One day a Nurse came in in tears. SHe was working with young children when a little one had told her that he couldn't understand why everyone was upset. He said he knew he was going to live with Jesus and couldn't Mummy and Daddy be happy? The child had not been told. So yes they do pick up on everything.

Surgery 9/19/2016 Lumpectomy: Left Dx 10/6/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/31/2016 Lymph node removal: Sentinel Targeted Therapy 11/28/2016 Herceptin (trastuzumab) Chemotherapy 11/29/2016 Taxol (paclitaxel) Radiation Therapy 4/3/2017 Multi-catheter: Breast
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Jun 28, 2017 11:17AM marycal wrote:

Thank you all so much. This is so tough. To make matters worse, I just received my oncotype. It was supposed to be low - I wasn't even worried about it - but it's intermediate. Now, I'm not as confident that I'll be positive and strong when I tell her. I'm struggling a little.

I very much agree with you all on not wanting for her to hear about it from someone else, and that they pick up on everything. You are right. But I'm also afraid of her, for example, going to preschool, telling her best friend, Mommy has cancer, and her best friend says, oh my brother's classmate just died from that (which is true. she was 9). Or someone says, oh yea, my grandpa died of cancer. Then my daughter not only has the information that people die from it, but that KIDS can die from it. I spoke with the director at her preschool about it, and she said that I should then probably explain that people can die from it. So now I have to tell my almost 5 year old that people die from what I have?? And put that into her psyche and subconscious?? Is there no end to this awful experience?!! She still so young. This makes me so sad.

mustlovepoodles (and KB870)- thank you for that story. It has really made me stop and think. They are so astute. It makes me want to be honest above all costs, but I'm really scared. Especially now since getting the oncotype test and now I'm much more fearful, which I don't want to come out in the convo. And thank you for the book suggestions.

meg2016 - thanks for that website. Very helpful

gb2115 - I don't blame you!


LX did not get clean margins on DCIS. MX showed DCIS scattered throughout and also LCIS. Dx 5/26/2017, DCIS, Left, 3cm, Stage 0, Grade 2, ER+/PR+ Dx 5/26/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Lumpectomy: Left; Lymph node removal: Sentinel
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Jun 28, 2017 03:30PM kcat2013 wrote:

My youngest was 6 when I was diagnosed. I chose to tell him it was cancer because I knew he would over hear others using the word and I figured he would be much more worried if he heard it that way than from me. We had recently lost a good family friend to cancer and I knew that my son would immediately think of our friend if he heard cancer and assume I was dying also. Telling your little one you have cancer can be very hard but then once you've said it, it's out, you can answer their concerns and then you can only discuss it as "cancer" again if you feel the need for some reason. After our initial conversations we rarely used the cancer word again, just talked about what was going on in general terms (like for chemo I explained the need for medicine to make sure my body got well). Good luck, I don't think there's a right or wrong choice on this!


34 at diagnosis Dx 8/2013, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR-, HER2+ Surgery 9/4/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/25/2013 AC + T (Taxol) Targeted Therapy 2/7/2014 Herceptin (trastuzumab) Surgery 6/20/2014 Reconstruction (left); Reconstruction (right)
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Jun 28, 2017 07:45PM mustlovepoodles wrote:

Marycal, it's true that she may hear that people due from cancer. But keep in mind that your daughter will take her cues from you. If you tell her that you are NOT going to die, she will probably take it at face value. Heck, when I told my 24 &30 year olds, I told them that I would be having some surgery but I wasn't going to die from this--they totally accepted that. I think the fact that I went about things with pragmatism helped reassure them that although things might get difficult for a time, ultimately everything would be all right.

Will it recur? Who knows? My ER+PR- cancer is considered more aggressive and I do have two gene mutations that cause BC and other cancers. But I can't go there and stay there. If it comes back, I'll deal with it the same way and I won't feel guilty that I "lied" because I fully expect to remain NED at this moment.

All my best to you.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/19/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/3/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Jun 28, 2017 09:50PM exbrnxgrl wrote:

You've gotten some good feedback. May I also suggest that you check your local library and the American Cancer Society for books/pamphlets on how to talk to children about cancer.

I am a first grade teacher and I have seen parents handle stressful situations in different ways. Some choose to be open, in an age appropriate way, others choose to reveal little or nothing about their condition. Almost without exception, the kids who have been dealt with openly and honestly, have an easier time. Children are very perceptive to goings on in their home life. Even if nothing is said to them, they know when something big, like a cancer dx, is going on, but if they haven't been told the truth, they create all kinds of scenarios in their minds or act out in weird ways, that they don't even understand. It is also very important that your daughter feel that she can ask you anything about your condition or speak freely about her fears and concerns. Making cancer a forbidden topic only leads to more anxiety. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole)
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Jun 29, 2017 12:41AM marycal wrote:

mustlovepoodles - thanks again for your insight. All my best to you.

xbrnxgrl - yes absolutely, I agree. I will explain everything to her in an age appropriate way and will continue the conversation past just this one time. My only concern was naming it with the word cancer. I was never entertaining the thought of just not telling her anything about my diagnosis. Thank you for your comments.

All of these replies have been great and have really helped my family and I talk through this issue. Thanks to everyone!

LX did not get clean margins on DCIS. MX showed DCIS scattered throughout and also LCIS. Dx 5/26/2017, DCIS, Left, 3cm, Stage 0, Grade 2, ER+/PR+ Dx 5/26/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Lumpectomy: Left; Lymph node removal: Sentinel
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Jun 29, 2017 12:45AM marycal wrote:

kcat2013 - I meant to say to you that you make a good point. That even though you've named it from the initial conversation, you rarely use the word going forward. That's a helpful thing for me to think about. It just makes me feel better remembering that we won't necessarily be batting the word around a ton. So thanks.

LX did not get clean margins on DCIS. MX showed DCIS scattered throughout and also LCIS. Dx 5/26/2017, DCIS, Left, 3cm, Stage 0, Grade 2, ER+/PR+ Dx 5/26/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Lumpectomy: Left; Lymph node removal: Sentinel
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Jul 3, 2017 09:28AM - edited Jul 3, 2017 09:33AM by BlueKoala

We use the word 'cancer' quite openly in our house. My kids were 9, 5 and 3 when I was diagnosed a bit over a year ago. I initially told them that there was something growing in me that the doctors would need to cut out before it grew all through my body, because that would make me so sick I could die. Within a few days, though, we were calling it cancer - my eldest wanted to know EXACTLY what the sickness was called and how I got it and ALL the details.

As long as I am honest and relaxed with them, they seem to handle it fine. Cancer rarely comes up in conversation now

35 at diagnosis. Complete response to chemo! Dx 3/15/2016, ILC, Right, 6cm+, ER+/PR+, HER2- Chemotherapy 3/28/2016 AC + T (Taxol) Surgery 9/8/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 10/24/2016 Whole-breast Surgery 6/21/2017 Prophylactic mastectomy: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Jul 5, 2017 08:37AM skelly wrote:

I have 3 kids, 20, 12, and 8. knew I would need to tell the 20 year old, everything. I knew that my 8 year old autistic daughter would not understand alot of it, so it was "mommy is sick, but will get better." My 12 year old was the hardest. I waited until just before my lumpectomy, when I had as much information as I could, and told him, using the word cancer. There are still times that he just calls it, "your thing". I tell him, "This is like Harry Potter. This is NOT "That which will not be named". We will call it by name, without fear, and then we will kill it."


She does not get eaten by the eels, at this time. Dx 4/24/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Sentinel
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Jul 15, 2017 03:00PM avidreader wrote:

My boys were 8 and 5 when I was diagnosed this spring. I chose to use the word cancer. My 10 year old niece overheard in conversation that I had breast cancer, and she cried when she was alone with me. I was glad, at that point, that I'd been honest with my boys because they didn't overhear it in conversation and then make it "bigger" than it needed to be. I told my kids, and my nieces and nephew, that no question was off limits and I'd do my best to help them understand, but this was all new to me, too.

Of course, our 9 year old dog wound up having a cancerous lesion on his side recently and we had to talk to our boys about the possibility of his death, etc. My kids then started to wonder how we knew I'd be saved and the dog wouldn't. Thankfully, the vet was able to save the dog with some surgery.

DX at 33. Dx 2017, IDC, Right, 4cm, Stage IIA, Grade 2, ER+/PR+, HER2- Surgery 4/7/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/22/2017 Whole-breast: Breast, Lymph nodes, Chest wall

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