Telling family members about a diagnosis of breast cancer is often difficult. Women told us that deciding how to break the news with children was a particular challenge. Women with adolescent or young adult children were often concerned about disrupting their lives. This led some women to delay sharing the news, for example, if their children were away from home or were writing exams. Kathryn explained that she moved her daughter out of the house because she knew she wouldn't be able to concentrate watching her go through the treatment.
The kids all got home from school that afternoon. We sat them down. They were teenagers, first year university and two in high school and I let them know that I was diagnosed with cancer that a biopsy was going to happen and that’s all I knew. Lots of tears, lots of questions.
When I was telling my family, there was only two children that we didn’t tell. They were the two youngest girls. I chose not to tell one in particular because she gets upset over everything, the littlest thing, she panics over. So we chose not to tell her in particular. And we didn’t tell the other one because they’re both the same age, and they still don’t know.
Women were also concerned that their children learn about their cancer from them rather than pick up on it from overheard conversations or from friends and neighbours who might know about it or suspect. They also wanted their children to be able to ask questions and to get answers.
It was Thanksgiving weekend, and I called my husband and told him you better, you had best come home and I was very upset, he was very upset and he didn’t want me to tell my children. He wanted... and I was like... so that was more upsetting because it was about a week after that I finally told them. They were only in Grade 7 and 9 then.
Women with younger children had to find ways of talking about their illness so that their children could understand and wouldn't be frightened or upset. They wondered whether or not to use the word cancer in their explanations since it has such strong associations with dying. Melissa told her only son about a tumour, and still today feels she did not word it well. When her son heard the word cancer he realized what it was about and that was a challenging moment.
Children have got to be the hardest thing to put into this equation. I think if he wasn’t around it would be so much easier because you’re brain goes to what’s going to happen? Am I going to see him go to Grade 12, and am I going to be able to be there for him? And it’s really, really difficult. How much information do you tell him? And one thing that I really realize is that you now go from a 5-year-old to an 11-year-old and their brain changes and their ability to comprehend completely change and they sense. My son and I are incredibly close and they sense it, if you don’t say something they go to a really dark place and they think the worst and stuff like that. They don’t need to know everything. He didn’t know a lot of the places where it was he just knew that the cancer had come back. He maybe... we were lucky because when he was younger mom beat cancer, right... so mom’s going to be okay. So he doesn’t quite get the fact that I probably won’t be okay. And that’s okay. He doesn’t need to know that. I sat him down after I got all the information and that’s again, I didn’t want to tell him before I had all the information because I wanted to be able to give him a true picture of what was going to happen. And you keep it in honest minimal detail. I guess would be the best... I can say it and he just understood that the cancer had come back. Now this is going to mean that we have to go back through chemo and radiation and all that sort of stuff.
On the metastatic journey or the advanced breast cancer journey, how I discussed it with my son was to say that it had come back and that we have to go after it. If you’re listening to this as you’ve already probably been told is that metastatic isn’t going to go away. You’re going to have cancer in you at some degree and you’re never going to be cancer free or be classified as cancer free. So I was honest with my son and just sort of said, I used the term that it was like a chronic condition that we’re always going to have to be watching it and that I’ll always be going through different treatments and have treatments and it’ll vary how I respond to the treatments in terms of...if the cancer comes back or when the cancer comes. Not if the cancer comes back but if the cancer starts to grow again and different things like that. That seemed to provide him with some ability to get his head around it and not to put him in a scary spot. Some kids they’re the social workers at most places will have programs for children. My son never wanted to go to one but I always tried to find some time where it was just him and I. I found snuggling with him in his bed where we’re not looking eye contact, then he could ask some questions and some hard questions like am I, "Are you going to die?" And things like that and you’re going to get that question depending on the age or if you don’t get the question you should bring up the question because it’s going to be in their heads. That’s a very difficult question and you should probably think through it because it’s a hard one to deal with.
Interviewer: Can you tell me how you responded to that question?
I felt it was very important and what I had read is that you have to be as honest as possible because then if you’re not then they feel that you’ve lied to them and there’s a lot of anger afterwards if you do die. That’s what I had read so what I chose to do with him is I introduced it slowly, let him get used to the idea and then I would snuggle and then just ask him about different things or say different things and try to bring him out. And then when he did ask that question I told him that I didn’t know. I said, I was honest and I said "This one I don’t know if we can, if mommy will ever be, I will never be cancer free and I don’t know what this is going to mean. But all I can tell you is that I’m going to fight my hardest to do everything I possibly can to beat this." Because that’s something that he could understand and relate to. But if you want to be brutally honest is to live as long as you can but I think at 11 he doesn’t need to hear that. I think to make sure that I’m around to beat this is okay. In his idea of beating it is just make sure the cancer doesn’t come back. And then, they can only, I was just giving him little bits of information at a time in terms of what it meant and things like that.
Some women found that allowing their children to be involved in their care helped the child make sense of the situation. For instance, allowing children to come with them to medical appointments if they wanted to, not hiding medications, and allowing their children to see their bandages and their bodies after surgery could make things seem less mysterious and frightening. Samantha's daughter was seven years old at the time she was undergoing treatment. Being honest with her and allowing her to be involved in her care made the situation less scary. In the clip below Samantha speaks about helpful advice.
I think that’s what made me the most anxious about the whole thing, what do I say to a 7-year old? The advice that I got from my GP (General Practitioner) was to tell her as much as she asks. Don’t tell her more than she needs to know. His advice was, be as open as you can with her because children can feel like they’ve been lied to if they don’t get the straight bit.
Effect of the Age of Children
Some women had very young children at the time of their diagnosis and treatment. For example, Julie's daughter was only 2½ old at the time. Nonetheless, she found ways of speaking about her situation so that her daughter could accept it and understand it. She also allowed her daughter to be involved in her care. You can hear more about this in Julie's clip.
My daughter was 2 ½ years old when I had my first surgery and I was very honest with her. I used the words that you must use with a two and a half years old, and in her two and a half years old mind she understood what she wanted to understand. Also, I involved her a lot in my care. I had… I didn’t hide my dressings, I didn’t hide my medications.
In some cases, talking to children about cancer included talking about the possibility of dying. Unsurprisingly, this was a very difficult subject for women to tackle and the age of the child was a big factor in deciding how to approach the conversation. Other factors were the woman's diagnosis and prognosis (what type and stage of cancer the woman had and what the doctors thought was likely to happen). When Samantha's 7 year old daughter asked whether she could die, she answered honestly but re-focused the conversation by talking about the benefits of treatment. She was also able to draw on the experience of other people they knew who had cancer and did not die.
They had a lot of pamphlets, a lot of books; one of them was how to help my children through this which was a big thing for me. I didn’t want them to be too scarred by all of this. But in the end, I didn’t even... There was a book that I could read to them, but the kids are very resilient and very okay. They were okay, my oldest one probably understood more the implications of breast cancer and the fact that in theory I could die. So she was probably the most affected by it and the younger ones just wanted to know about my hair and how I was going to lose my hair and then they said "Okay, can I have lunch now?" And that was really the end of it.
I think my husband and I both tried to just tell them that I’m sick and I won’t feel well sometimes but everything’s okay. That’s just the way it is and it’s going to be like this for a little while but there’s nothing to worry about. And for the most part they haven’t worried.
Interviewer: And did you give them all the same message because they have this age range or how did you manage that?
You can’t give them the same message because they don’t understand it in the same way. So my older one I really I told her the truth and all of it. That I had to do chemo and what the chemicals were going to do to me and in my body. But I just tried to reassure her that I wasn’t going to die. I was going to get very sick but it would be okay. And then my younger ones, I just said mommy was sick and sometimes I wasn’t going to feel good but that it would be okay afterwards. That they just had to be patient with mommy when she wasn’t feeling well. And they’ve been okay, they’ve been good with it. They’ve been good with it, I think sometimes they kind of forget and I have to say "I’m really not feeling well and I can’t do that." And they go "Oh! Okay."
In cases where women were living with cancer that had come back or had spread to other parts of their body, the conversation could be more difficult. Debbra's son was 5 when she was first diagnosed with cancer, and 11 when her cancer recurred. She reflected on the differences between the conversations she had with her son the first time they were faced with cancer, and those she had the second time around. She speaks about this in the clip below.
The day before I went in for surgery, I sat down and said that I had some bad cells. I used bad cells instead of cancer for a couple of different reasons. I think it’s really important for kids to... at various different ages to hear the different kinds of information. Bad cells they can relate to something’s wrong and that it’s got to be taken out, especially at age five. That was easy for him. Using the cancer word or the ‘C’ word I think is just terrifying because they see different things and they hear different things about people dying of cancer. Until you know where your stage is at and what kind of diagnosis you’re actually going to have, I think that’s almost like overwhelming and it creates a little bit more fear in their little minds than it’s worth type of thing.