Telling Your Children You Have Cancer

No one wants to be told they have cancer, and no one wants to have to tell their loved ones that they have cancer. There’s no easy way or time to to say it to anyone; but we have heard from many women with breast cancer that the hardest people to tell were their children. Many believed they should be honest from the beginning. Others wanted to protect their young children and chose to keep it from them. We wanted to hear real stories from women and how they chose to handle it, and we also wanted to hear from social workers on how they recommend parents talk to their children about their cancer. Here are some of the stories we heard.

Elizabeth

I don’t want it to be like a weird, I’m gonna die, sit down announcement.  I just want them to know I have breast cancer and I will begin recovery.  I told my husband over the phone but he knew I was waiting for a diagnosis. I’m not trying to make light of the situation but I’m not trying to give it power either. Right now telling them is giving me the most anxiety. Is a phone call too impersonal? I also think it gives them the opportunity to process the info and maybe have a little break down after the call. I know I am a person who grieves privately.

Rachel

My daughter is 4 and I was pretty up front with her.  She knew that mommy’s boob had an owie (as she announced to a room of dance moms at her recital) but didn’t understand what cancer meant.  When I sat her down to talk to her, our conversation went like this:

Me – “Mommy has a bad owie called cancer and I am going to have to take some medicine that is going to make me really sick.  My hair is going to fall out but I’m going to have to go through this to get better.  Will you still like me?”

Her – she looks at me for a second and says “No. I not like that. Will I lose my hair?”

Me – “No, just mommy.”

Her – a big look of relief goes across her face and she says “Oh ok.  I not like that but I love you mommy.  I’ll help you get better too.”

If we have to face anything that looks like it could be the end then I will have a more in-depth talk with her so that her daddy won’t have to.

Kris

I did not tell my nearly 7 year old twin girls. I told them the radiation stickers were temporary tattoos I was trying out. I didn’t want them to live in fear of losing Mommy if it could be avoided. I had lumpectomy last November and they had no idea. I had a complete hysterectomy and had to tell them, but was very vague with my explanation as to why. I am strongly considering going back for a dmx and will probably have to explain more fully if so. Otherwise, I will probably hope to tell them in their early 20s when it’s time for them to start getting checked. I’ll tell them they need to be aware that they have a family history, so you should start getting checked around age 25 and be very on top of what’s going on with your body, and be as healthy as you can to take all the precautions you can.

Doreen

My 14 year old twins were there when I got the call. I was totally honest and told them everything from the beginning. We have a deep faith in God and have felt His peace from day one. They want to know I’m keeping nothing from them so total honesty and full disclosure has been key for them. They have been wonderful and really stepped up around the house with chores etc. I think they both feel empowered by what they can do. It’s been a growing experience for us all. Always relying on the Lord for everything.

Alison

My kids took it pretty well.  My 11 year old son asked if his sisters would also get it (the girls are 25 & 13). That was heartbreaking.  We told them that of all the different kinds I had a good kind which was treatable and curable.  My son then told a few of his close buds that his mom had the good kind of cancer. Have to keep the humor going on this roller coaster.

Melissa

I said you know how Mommy loves to be healthy… well mom went to go have a X-ray  done since I turned 40 and they found some bad cells that could hurt mommy so now I have to medication that will make it go away. My son age 10 still cries every day and every night saying how he hates this, he hates everything.  He has lost his smile.    My 8 year old girl is so sweet and said she wants to shave her head like mommy will and loves me.  My 5 year old son just kisses me and says I will look like an egg soon.

Brandy

My boys were 5 and 7 at the time of my initial surgery (6 more since the first). My husband and I sat them down to tell them together. We were very honest with them and let them ask questions. We also told their teachers/caregivers as well so they would not be caught off guard. We have continued to be very open and honest with them. They know every doctors appt I have and they have seen everything from my drains to my incisions. Kids understand a lot more than we give them credit for, and keeping stuff from them only makes them sense something scary. We believe in God and the power of prayer (and bonus they got to see God in action!!) I feel us being honest has helped them to feel more comfortable and that we were not keeping anything from them.

Advice from a Counselor

Jan Hairston is a licensed professional clinical counselor with a supervisory endorsement (LPCC-S) in Ohio, with 34 years of experience in direct care and program management and development. She is also a 15 year survivor of Inflammatory Breast Cancer whose son was 8 when she was diagnosed. Her husband was diagnosed with cancer the following year and has had 6 recurrences. He has just been told that there is nothing else that they can do and has been out on home hospice care. Their son is now 24.

“I’m in a unique position,” Jan told us, “as both a professional and someone who had Inflammatory Breast Cancer. My husband is a social worker and was diagnosed a year after me. From a professional standpoint, you have to take into consideration your child. Consider their age and what you know about them and how they may respond. The mistake some people make is not giving kids credit for how much they do know. Kids are very observant and intuitive. They may not know the details, but they know something is different. If you don’t say something, they will fill in the details themselves, and 9 times out of 10 they will be way off base, which will worry them more than if you had explained something. Your hair falls out, your nails fall off, you have difficulty eating. Your child will see that. They hear things between parents, or from you on the phone; they’re getting bits and pieces without hearing the story from you. Give them as much information as you think they can handle. With a toddler, you don’t need to break down the whole thing, but tell them enough they understand. My son was 8. I told him I have an illness called cancer, because at 8 I knew he could understand that word. I explained that because of that, I needed to go to doctors a lot and take some medicine that might make me sleepy, and that had some side effects, and things will happen but I will explain it to you as we go. I didn’t load down at the beginning but gave enough info to understand. He went to school next day and told a friend I had cancer. Unfortunately this child had recently lost a grandparent to cancer, and told my son, “She’s gonna die.” He came home upset and asked me directly if I was going to die. This is where it gets tricky. A parent’s natural instinct to comfort and reassure. But I couldn’t say, “No, I’m not going to die,” because I didn’t know at that point, and if I had died, my son would think I had lied to him. So I said, “Well, that’s not the plan. I am going to do everything I can to make sure that doesn’t happen.”  That’s all I could say truthfully. I was able to reassure him without lying.

You don’t have to tell them everything at once. Give them little bits of information, and check in throughout the process, asking if they have questions about what they’re observing with you. Many hospitals have social workers who do this, and there are also good children’s books that are age appropriate and give examples of how to explain cancer to your children. Read the book together and answer any questions they have about your situation.

It’s really important to maintain as much of a normal routine for your children as you can. That’s really hard when you have something terribly not normal happening. Routine is calming to children because it provides them with stability and support. Keep as close to their normal routine as possible. We had a lot of friends we utilized when we needed to and my church was phenomenal. I was in the hospital while my husband was on a work trip  and my son had a concert at school. Our pastor took our son to the school concert, and because he couldn’t stay, then youth pastor came and took care of other half and brought him to his house where he stayed until another friend could pick him up. I tried to keep things normal for him as well as myself. I chose to work through my treatment – only took off after surgery –  because I knew if I sat around I would just think about how sick I was. I didn’t want life to be all about cancer. I would watch his softball games as long as I could, and when I got tired, I would lay in the car until the game was over. I didn’t want my son’s routine with ball to be disrupted by cancer. Not everyone can do that, but where you can, keep things normal.

It’s very important to check back in. Don’t think because you explained it they have all the info they need. Observe, check in, ask if they have more questions. They may have them but don’t feel comfortable asking without being given the opportunity.”

Note: Since we interviewed earlier this summer, Jan’s husband passed away, with her and their son standing at his side. “We’re now dealing with the cancer related death of a parent for an adult child,” she said. “It’s equally as devastating, especially for an only child, when reflecting on the things that the parent will miss – his graduation from his MBA program, his marriage, future children, etc.” 

Meredith Cammarata, LCSW-R,  is a Senior Clinical Social Worker with Memorial Sloan Kettering’s “Talking With Children About Cancer” program. They work to provide family communication and support, introduce support groups to families, and connect families with resources in and out of Memorial Sloan Kettering. They are also available to help guide school professionals in the community whose students may need support while dealing with the illness of a parent.

I asked her what her advice would be to parents unsure of how to handle talking to their children about their illness.

“The discussion will vary depending on the child’s age,” she said. “We can talk about literature and what we as professionals recommend, but the parent always knows the child best. That being said – we recommend children at any age be told about cancer, and that the parent uses the word “cancer”. Kids can often sense there is a different energy in the house – even babies. Left to their own devices, children may start to make up things in their minds and start to worry that whatever is going on in the household is really bad. This can make them feel alone and scared.  If you’re open with them, they will express feelings and ask questions. This helps them feel not alone in their fears.”

We asked her what she recommends in the worst situations – how do you talk to your child when you know you are dying?

“As a parent becomes sicker,” she said, “kids start to see changes in their behavior and appearance. Talking to the child about what they’re seeing and feeling is important. There’s no easy way to prepare a child for a parent’s death. Each family is different on how they approach conversations. There are certain things to consider – what’s the child’s past experience with death? If they’ve experienced the death of a family member, or pet, or even TV character, you can use those reactions as a guide. Understanding the permanency of death can be really difficult for young children. A young child might ask when are they coming back, and a school aged child might understand better. If your family has religious or spiritual beliefs, this is a good time to incorporate those beliefs into conversation. We encourage parents to be open and honest – you can say, “The cancer is growing and medicine is no longer working, and I’m going to die.” Having one on one support from an oncology social worker can be very helpful in these situations.  This might also be the time to start, if you haven’t already, bring in family and friends that want to help; especially family/friends that know and love your child.”

We asked her what she hopes parents know when they are in this position. “You know your child best,” she said. “Use that guide to help you – along with an oncology social worker – and family and friends who care about you and your child. When you’re talking to kids, remember to tell them there’s nothing the child did to cause the cancer. Depending on age and development, young children believe that their thoughts and actions can directly influence events around them. It’s important for them to understand that nothing they ever did caused their parents cancer and it isn’t their fault. They also need to understand that they can’t catch cancer like a virus or a cold, because many children assume they will catch it from you.”

If you are a parent going through cancer treatments, ask your doctor to connect you with an oncology social worker. Many hospitals have them on site, and they can provide help to you and your family. There are programs and camps across the nation that provide opportunities for children of cancer patients – many of them free of charge – to come together to bond and give them a break from their parent’s illness. Please see below for some recommended resources.

Resources:
The Gathering Place is in Cleveland, Ohio.  Donation funded, it provides free services to anyone touched by cancer in any way. Www.touchedbycancer.org
Camp Kesem – Free camp offered in multiple US states for children who have a parent with cancer www.campkesem.org
CLIMB – Children’s Lives Include Moments Of Bravery. A national program with multiple locations in the US and in UK to provide emotional support to families affected by cancer. https://childrenstreehousefdn.org/climb-locations-worldwide
More camps and programs for families affected by cancer at https://www.cancer.net/navigating-cancer-care/children/camps-and-retreats-families-and-children-affected-cancer