Talking to Your Kids About Cancer
- TV presenter Jonnie Irwin, 49, admits he’s struggled to share his stage 4 cancer with his young sons after being diagnosed in 2020.
- Parents living with cancer are encouraged to be as honest with their children as possible when explaining their condition with language that they can understand at their age.
- The treatment of lung cancer has evolved dramatically based on the genetic and molecular makeup, which in some cases can help inform the treatment plan.
- Testing can search for hundreds of different genetic mutations including those that are common in lung cancer and for which new, highly effective, and much less toxic treatments are available.
- Many of these genetic changes that influence your cancer can be targeted with medications, such as targeted therapy.
Though famous TV personality Jonnie Irwin, 49, has been living out his brave stage 4 lung cancer battle in public, his young kids don’t know he has the disease. The father of three said he’s been struggling with whether he should reveal his cancer to his children, who are all under 5. This is a challenge that so many cancer warriors are familiar with, and SurvivorNet has some suggestions to help you with this stage of your journey.
"I keep being asked, 'Are you going to tell them?'" Jonnie Irwin said to Hello Magazine.
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We should note that we do not know the exact type of lung cancer Irwin has. But there are two main types of lung cancer, which doctors group together based on how they act and how they're treated:
- Non-small cell lung cancer (NSCLC) is the most common type and makes up about 85% of cases.
- Small cell lung cancer (SCLC) is less common, but it tends to grow faster than NSCLC and is treated very differently.
After learning about the progression of his cancer, Irwin admitted he struggled to share the news with his wife Jess.
"I had to go home and tell my wife, who was looking after our babies, that she was on her own pretty much. That was devastating," Irwin said.
Irwin’s young sons are between the ages of 3 and 4.
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"All the boys gravitate to him," Irwin's wife said.
"It would be horrible news that they'd have to get their heads around. And it would confuse the hell out of Rex (the eldest) he's got a shocking enough day coming. Let's bury our heads in the sand for as long as possible," Irwin said.
Rather than letting the weight of his cancer diagnosis weigh him down, Irwin is trying to keep a positive outlook on life.
"I don't know how long I have left, but I try to stay positive, and my attitude is that I'm living with cancer, not dying from it," Irwin said.
He is focusing much of his time and energy on creating moments and lasting memories for his sons.
"I want to make plans. I want to make memories and capture these moments with my family because the reality is, my boys are going to grow up not knowing their dad and that breaks my heart," Irwin explained.
Expert Lung Cancer Resources
- 7 Lung Cancer Symptoms to Know; This Disease Can Be Tricky to Catch Early & Doesn’t Just Affect Smokers
- A New Development in the Fight Against Lung Cancer: Explaining the Liquid Biopsy
- A New Option for Some People With Lung Cancer: How This Immunotherapy/Chemotherapy Combo Can Increase Treatment Success
- A New Option for Some People With Lung Cancer: What the Approval of Lorlatinib Means for Patients
- Advanced Small Cell Lung Cancers Can Benefit from the Promising Immunotherapy Drug Keytruda Now, Too
Tips for Parents Struggling to Talk About Their Cancer
After a cancer diagnosis, talking about it can be challenging, especially when children are on the other end of the conversation. It's important to prepare them for what might happen in the future, but you want to be gentle with this sensitive subject.
Jonnie Irwin, like many parents diagnosed with cancer, appears to find strength and joy in his children. But he said he has delayed sharing his cancer diagnosis with his preschool-aged children.
There is no single way to go about discussing cancer with children, as widower John Duberstein explains with SurvivorNet.
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Duberstein lost his wife to breast cancer, but before she passed away, the couple discussed her cancer with their children.
WATCH: Talking to kids about cancer.
"I think it's really important to be open with the kids as much as you can, as much as you feel like they can handle," Duberstein explained.
"When Nina started to look less like a cancer patient, the kids started to make unspoken assumptions about where Nina stood," Duberstein said.
He went on to say as parents, they had to counter false narratives, which developed in their children's heads about their mother's prognosis. They had to gently remind them her cancer was not going away.
"It was hard for them to hear even though they'd already been prepared," he further explained.
If parents find themselves nervous before having this conversation, licensed clinical psychologist Dr. Marianna Strongin said children can pick up on your emotions, so it may help to check in with yourself beforehand.
“If at this moment, you are feeling scared, it might be helpful to calm and soothe yourself first before speaking to your child,” she said.
“Having these conversations may bring up deep emotions you may have stowed away. There is nothing wrong with showing our emotions to children as long as we can remain calm and give them a sense of safety,” she said.
Helping them feel safe can mean giving them tools and strategies to manage their feelings about the situation.
“I love using my childhood self when explaining anything to children,” Strongin said. “I might say, ‘when I was your age, I remember feeling scared of many things, but one thing that always helped is taking three very deep breaths and telling my body it will be okay.’
“It is these kinds of dialogues that allow our children to feel safe and in control.”
Biomarkers Changing Treatment Approaches for Advanced Lung Cancer
Stage 4 means that your cancer has spread to other organs, which may include your brain, liver, and/or bones. In the past, chemotherapy was considered the treatment standard for stage 4 lung cancer, but biomarker testing is helping doctors find more targeted, less toxic treatments.
If you have lung cancer, you should talk to your oncologist about genetic testing to better understand the molecular characteristics of your tumor. Testing can search for hundreds of different genetic mutations including those that are common in lung cancer and for which new, highly effective, and much less toxic treatments are available.
"The way to find the best treatment for you when you’re diagnosed with Stage 4 lung cancer is to get your tumor characterized," thoracic oncologist Dr. Geoff Oxnard of Boston Medical Center previously told SurvivorNet.
Doctors can perform tests on tumors that involve genetic sequencing to learn more about how your cancer develops and spreads.
"Next-generation sequencing is testing that we do in order to find special mutations or alterations within a patient’s tumor," Dr. Katherine Scilla, a thoracic medical oncologist at the University of Maryland Medical System, told SurvivorNet.
"We can do this on tumor tissue itself, which is our kind of gold-standard approach. Or there are newer technologies looking at what we call liquid biopsy or circulating tumor DNA, which is little bits of DNA that’s being shed out into the bloodstream that we can collect on a peripheral blood draw and do a lot of similar testing, looking for changes within a patient’s tumor," Dr. Scilla further explained.
Many of these genetic changes that influence your cancer can be targeted with medications, such as targeted therapy. Essentially, the more targeted the therapy, the lower the risk for side effects and any type of collateral damage such as hair loss.
Common mutations that have approved drugs include:
- EGFR gene mutation
- KRAS gene mutation
- ALK rearrangement
- ROS1 rearrangement
Dr. Oxnard told SurvivorNet that his lung cancer patients using target therapies are living vibrant lives.
"Patients of mine who are taking a (target therapy) pill once a day…their cancers melted away," Dr. Oxnard said.
Noting he only has to see them for follow-up appointments "every few months" and that they are "living fully."
However, Dr. Oxnard cautions that targeted therapy drugs for lung cancer patients may not last forever.
"They can develop resistance," he said.
One way to stay ahead of the curve of your tumor is to do regular testing of the tumor to ensure your treatment options remain effective.
WATCH: Genetic Testing and Lung Cancer Treatment
There are also immunotherapy medications, which boost the immune system’s response to the cancer, available based on the expression of certain proteins in the cancer cells.
For example, lung cancers that produce high levels of the protein PD-L1 are 50% more likely to have a dramatic response to drugs that block PD-L1, called checkpoint inhibitors. And when those drugs are combined with others that tweak the immune system, the results can be even more effective.
PD-L1 is a type of protein that “acts as a kind of ‘brake’ to keep the body’s immune responses under control,” the National Cancer Institute explains.
READ MORE: What Is PD-L1 Testing In Lung Cancer And Why Does It Matter?
Examples of checkpoint inhibitors that target PD-L1 to help the immune system recognize the cancer include:
Dr. Scilla tells SurvivorNet that most insurance companies cover genetic testing for lung cancer patients.
Questions for Your Doctor
Patients are encouraged to talk to their doctor about having testing for gene mutations and other biomarkers of their cancer, which can help determine which treatments may be best for them. Here are some questions you may ask your doctor:
- What stage is my cancer?
- Am I a good candidate for genetic testing or testing for other biomarkers?
- What do my test results mean?
- What treatment options would you recommend based on my biomarkers?
- What are the possible side effects should I expect based on my available treatment?
- Will insurance help cover costs associated with testing and treatment?