How does a metastatic cancer diagnosis affect families, especially children? CURE® spoke with Kate Watson, a patient ambassador for METAvivor, about the tricky balance of protecting and empowering kids.
A patient receiving a diagnosis of metastatic breast cancer might immediately worry about how the disease will affect their family dynamics. Among the many challenges: how to discuss the diagnosis with children of any age.
In partnership with METAvivor, a group dedicated to research, awareness and support focused on the needs of women and men living with metastatic breast cancer, CURE® spoke with patient ambassador Kate Watson about how a diagnosis of breast cancer that has spread to distant parts of the body affects everyone in the family. She also offered advice for parents facing this situation.
Watson: First you’re shocked that this is the diagnosis that you’re facing. There’s fear, there’s anxiety. And you might be the one who’s going through all the physical changes and the treatment, but that doesn’t mean that it’s not weighing heavily on your family — your parents, your partner, your spouse, your kids. From the get-go, it’s important to open the lines of communication and make sure that everybody is on board with ... knowing that they’re going to be sharing how they’re feeling openly and letting the patient drive how the conversations will go. But the patients also have to be respectful that this has an impact on the whole family’s life.
When I received my diagnosis, my daughters were 2 and 4. I really struggled with (these questions): What’s the right way to tell them? What’s too much? What’s too little? It’s going to be a lifetime experience for them, but at the same time, they don’t really know any different when they’re that young. So, my first piece of advice would be to wrap your head around what the likely treatment plan will be before you even talk to your kids. Are you going to be on a type of drug where you’ll lose your hair?
Are you going to have surgeries that have a long recovery period? Once you know what it is that you need to explain to your kids, you can break it down into what’s age-appropriate, because you don’t want to scare them into thinking that Mom’s going somewhere tomorrow and that this is imminent; but it is a lifelong disease. So, my kids were involved. When I started to lose my hair, we had a hair-shaving party to make it a little less scary. I didn’t want to walk into the house one day and all of a sudden be bald, with my 2-year-old having no idea about what was going on.
I would suggest that if you’re going to treatment, use the same caregivers so you continue to make the routine as normal as possible in a very abnormal situation. That was helpful for us.
Have a conversation with your hospital system’s oncology social worker. That was where I first started when searching for programs for my kids. When something arose while I was going through treatment, I was often in touch with them to ask for their advice: How do I frame this conversation with a kid who’s this age?
It’s also difficult because, when you’re raising kids, you never know if the behavior that they’re exhibiting is because Mom has cancer or if it’s just a normal kid thing. That’s what I found difficult and kept going over in my head: Is this cancer related? The social workers in the hospital system were really great at connecting me with local resources. That helped me think about the way that I was going to talk through what was happening before I actually sat down with my children.
The (experts I consulted) made it very clear not to say that Mom’s going for medicine. You don’t want a kid to think that anytime they come down with an ear infection or cold or flu, taking over-the-counter stuff is the same thing. This is not the same as what Mom is taking.
And just like every person is different, every cancer is different. So, when you are out and about and see somebody who looks sick, that cancer is different from Mom’s or Dad’s cancer. You need to keep them from fearing the absolute worst from the day you get the diagnosis.
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