Communicating With Children After a Melanoma Diagnosis

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Topics include: Patient Stories

Is it important for patients to communicate with family, especially children, during the process of cancer? Dr. Rena Szabo emphasizes the importance of communication with family, children and the community. Learn why experts believe it’s essential to include them as a part of the process. 

This in-person town meeting was sponsored by the Patient Empowerment Network through educational grants from Genentech and Novartis. It was produced in partnership with Banner MD Anderson Cancer Center, and the Melanoma Research Alliance.

 

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.          

Andrew Schorr:

Let’s go on to one other thing. So you have children. Some people have children or grandchildren in the room, and those watching, different ages.  So you have little kids. And they’ve been seeing this. How do you communicate with them about how Mom is doing and what’s next? Or is it a good day or a bad day? 

Martha Bishop:

We’ve been pretty up front with what I’ve been dealing. My kids call it melanomas because we have a walk team called mela no mas, like for Spanish, no more melanoma. And so we try and tell them about what’s going on at an age-appropriate level. When they were little, Mom was sick. She needed to get medicine.  And then as they got older, why isn’t your—our daughter is the more outspoken one. But why isn’t your melanomas getting better, Mom? And we had to talk about this is going to be a lifelong journey for me, a chronic illness and give some examples of other people like who have diabetes or who are in treatment all the time.

And then one thing that I dealt with was the anxiety that I thought of a little bit earlier was once my oncologist said it to me, and I latched on, and then I made him say it to me after every scan was there’s one point where I had lung mets, and he said, “Right now, you don’t have anything life threatening.  We need to treat it. But right now, these mets are not life threatening as they are.”  And I latched onto that. And for me, it gave me peace of mind, and it also gave me empowerment to say to my kids, “We are not going to—you don’t need to worry until we tell you it’s time to worry.” And for us, that was our agreement.

And eventually, I remember sitting in the Costco parking lot with the family, and I was like, “Listen up.” One of them was fixating. And I said, “That means if Mom is going to die, we’re going to tell you.”

But at this point, I’m not.  I’m in a good place. And so as they’ve gotten older, it’s gotten trickier. They’re 8 and 10 now. And my son just said to me recently, I lost a friend from melanoma, and he said, “Most people don’t make it, do they?” And so he’s just starting to put together those connections, and it’s getting a little trickier.  But that’s kind of how we’ve approached it. 

Andrew Schorr:                  

How about you with kids?

T.J. Sharpe:          

We just had this conversation at lunch. And I think I echo a lot of things that Martha said. Probably one of the biggest things is not so much that we’re up front, but we don’t really hide anything from them. My little one doesn’t understand, but my 5-year-old is starting to ask questions. And I try to relate it to other things. We talked about too much of a good thing, how I got melanoma. I had too much sun. Just like if she has ice cream it’s good, but if she has too much ice cream, she gets a tummy ache. And I try to relate it to things that I think she would understand.

Kids at a developing age need to understand it in something that they relate to. And I’m playing amateur psychologist here, but I think that’s what’s been important to me is that I let my daughter in that there is something that’s different. And we don’t really use the word wrong. But there is something that’s challenging, and we’re trying to get better and that we’re going to do everything we can to get Daddy healthy. 

And I think she understands that. And that’s enough for her right now.  

Martha Bishop:

I have one more thing. We also make sure that the teachers and other adults in our kids’ lives have their eyes open.

We’re really blessed to have an elementary school with a full-time counselor on staff. And so she keeps an eye out. One of our children has been to a private counselor. But we really try and ask people to give us a heads up if they see red flags.  

Andrew Schorr:                  

You went back to work. So you wear compression things. So some of the kids may notice, or maybe they knew.  Somebody said she’s been sick, or she has cancer.  So whether it’s in your work environment, or I don’t know if you go to church or other communities, you may be in, how do you handle communication about what you’re living with? 

Martha Bishop:

We’re finally at a point where there are some people in my life who don’t know. But it’s been such a big part since my kids entered the elementary school, which is probably our primary community that most of them know.

I have a yearly email that I send to my kids’ teachers when they’re going in and kind of give them an update.  I have a blog also. And so some of the other teachers at school fill in. And I know there’s lots of talk behind the scenes about how I’m doing.  But I’ll tell people that I have stage IV melanoma, and I’m doing okay. I’m pretty open about it.

Andrew Schorr:                  

Rena, what do you say to people about communication?  Is it a good thing, or is it just different? Some people don’t want to tell anybody. Some people want to tell everybody.  Some people are in the middle. From a therapy point of view, is communication good, in your experience or different? 

Rena Szabo:        

I think it’s essential.  I mean, I think it’s essential with whatever your system is, especially with individuals who have family members. You have to be communicating and opening up about the psychological, the cognitive, the biological issues that are enveloped in this process.  It’s not just a physical disease. And if you’re not talking about it, the people who love you and care about you or are on your health team, so I think it’s essential. And it may not be comfortable, but it’s essential.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on July 17, 2017