When Amy Anderson was diagnosed with breast cancer nearly four years ago, she didn’t know how she was going to break the news to her two children, ages 5 ½ and 8. So she checked out a book.
“It was a cartoon book that was age-appropriate but very simplistic,” said the 43-year-old Seattle advertising executive. “It introduced them to the cancer – but didn’t carry us through the bumps ahead. I had a lot of surgery and treatment and my coping skills weren’t really there. And now I have an immense amount of guilt about it all. I’ll never know what this did to them.”
Grappling with a cancer diagnosis is hard enough, but how do you share that information with your school-age kids – and then go on to successfully parent them while navigating surgery, chemotherapy, radiation and more?
That very question is at the heart of a six-state randomized clinical trial that examined the efficacy of a new cancer parenting program designed by researchers at Fred Hutchinson Cancer Research Center and the University of Washington. Called Enhancing Connections, the program is the culmination of 15 years of research into the little-studied field of parenting and cancer.
Designed for moms and dads facing any type of cancer, Enhancing Connections was tailored for families going through breast cancer then tested on 90 recently diagnosed moms and their 8- to 12-year-old children. These moms received five face-to-face counseling sessions and various informational materials while another group of 86 moms received a booklet and follow-up phone call, basic guidance comparable to what’s currently offered by cancer centers. After two months, the moms who received the Enhancing Connections tools reported feeling less depressed and their parenting skills improved while their children’s anxiety and depressed mood had significantly declined. A year later, the kids who received the program remained less depressed than the control group.
Lead author Dr. Frances Marcus Lewis designed the intervention after she saw a glaring need for scientifically sound guidance in this area.
“We discovered in talking to parents with cancer that even well-intended, loving, high-functioning parents didn’t know what to say or do to help their child,” said Lewis, a University of Washington Medical Center Endowed Professor in Nursing and Fred Hutch research affiliate. “It had nothing to do with education or profession or income. Parents from all walks of life and all ethnic subgroups didn’t know what to do. They’re preoccupied. They’re in survival mode.”
So, said Lewis, they just stumble through to the best of their ability. Some remain silent about their cancer diagnosis – telling Lewis they don’t want to scare their children – while others share too much.
“They would over-disclose and use frightening terms the children couldn’t grasp,” she said. “Or they’d start a conversation and then choke up and cry. Some would share biomedical facts about the disease or the staging or the treatment and augment it with interpretive text, saying things like, ‘Mommy’s going to have her booby cut off and I need to have it cut off because some women die from this.’ We had one mother of a 7-year-old boy who would clutch him and sob for hours because she was afraid she wasn’t going to be with him much longer.”
Not surprisingly, the researchers also found the children were often at a loss.
“Eighty-one percent of children in one study thought their mother was actively dying even in early stage breast cancer,” Lewis said. “Or in the absence of being told about the cancer in language they can understand, they create horrific images. One little boy said, ‘My mommy is being eaten up by the cancer. You can’t see it because of her skin but it’s eating her. It’s like Swiss cheese under her skin.’ Another little girl who was 12 said, ‘Every day, I’m sad and worried that I’m going to lose my mom.’ But she never told her mother any of this.
“The problem is not just that the mom and dad don’t talk to the child – that they wait for questions – but that the children don’t want to add to the burden of the parent,” she said. “You have two journeys of silent sorrow.”
And along with the sorrow, there is guilt.
“[Parents] hated that they had ‘brought cancer into the family’ and had huge feelings of remorse and guilt,” Lewis said.
In previous studies, recently diagnosed moms said they felt their anxiety over symptoms kept them from being responsive to their child and they didn’t know what to do or say for fear they would add to the child’s burden. Other studies show that without the right kind of messages, children can potentially carry a cancer burden around for years, even decades.
“A third of the children will go into their adulthood totally traumatized with nightmares and bad memories and depression,” Lewis said. “The cancer is a lenticular cloud in their life.”
Both Lewis and study co-author Dr. Barbara Cochrane agreed that knowing what to say to your child or how to react to their comments and questions is neither easy nor instinctive.
“Sometimes children can ask very innocent questions that can start a flood of tears in a parent and that can be difficult,” said Cochrane, a UW nursing professor and Fred Hutch researcher who’s been interviewing families about how they cope with cancer for more than a dozen years.
Some children might seem indifferent to the news. Others may become angry.
“My 9-year-old son felt left out because I didn’t tell him about the cancer until I was going into chemotherapy,” said Nancy Mott, a 49-year-old breast cancer survivor who was diagnosed last year. “He got upset and said, ‘Mom, you need to be straight with me!’ I think he wanted to help me through the process and I didn’t give him the opportunity. He really told me off.”
When Anderson shared the news of her diagnosis with her two children, they had completely opposite reactions.
“I remember my son was worried that he was going to catch it,” she said. “Those are the fears that little kids have.”
Her daughter, on the other hand, became hyper-responsible, trying to help her mom feel even more loved and cared for, not an uncommon reaction for kids in this situation.
“These kids are working so hard to grow up very fast and be very supportive to their parent,” Cochrane said. “It’s just a horrendous burden that the whole family is carrying. It is heart-wrenching and it’s also amazing to see the heroic things that kids and partners and women are doing to keep their family life moving along.”
Anderson had to balance her job, her marriage and her role as a mother with a double mastectomy, 16 rounds of chemo, 36 rounds of radiation, a hysterectomy, multiple reconstruction surgeries and the knowledge that she carried a BRCA2 gene mutation much like her father, who died of breast cancer shortly after she was diagnosed.
“Now that it’s been three years since my dad’s death and the end of treatment, I feel like I’m finally starting to crawl out of it, but it’s hard not to worry [about the cancer coming back],” she said. “And the worry takes me away from living in the present and being a good parent. They’re wonderful kids and they’re resilient, but in the back of my mind, I feel guilty. I grapple with being a good parent. I wanted to do things so differently but cancer sidelined my plans.”
Anderson said she “absolutely” would have loved to have had better guidance on how to talk to her kids about her cancer.
“Nothing is more important to me than my children’s health and happiness,” she said. “I definitely could have used support and tools to help them navigate this event in their lives.”
After 15 years of research, dozens of studies and thousands of family interviews, Lewis has now come up with those tools, which she’s used to design a program that helps parents learn how to listen to their school-age children, pick up on cues regarding what they need to know and better manage emotional triggers when talking about a cancer diagnosis.
The program includes five one-hour educational counseling sessions conducted in person at two-week intervals; an interactive booklet about cancer to be read by the mother to the child; a mother’s workbook to be completed by the mother and child together; and a “My Story” child activity book in which the child writes or draws about their mom’s diagnosis, treatment and the stress it causes them.
“You can find books for kids to read and books to guide parents, but other than having a good foundation in child development, there’s not a research-based approach,” Cochrane said. “This research is pretty darned unique and very, very important.”
And it works.
“Compared to the ‘controls,’ the mothers who received the Enhancing Connections program significantly improved on depressed mood and parenting skills,” she said. “And the children were also significantly less depressed, and that improvement was sustained one year after the study was over.”
At the heart of the program is the need to not just listen to children but to listen without judgment, Cochrane said.
“Let the children give cues as to what they need to know,” she said. “The intervention by and large is all about helping the mom develop listening skills and be tuned in to the things that are emotional triggers so they can manage [their emotions] no matter what the child is saying.”
For Lewis, it’s clear that handing a newly diagnosed mother a booklet or pamphlet and sending her on her way isn’t nearly enough.
“It’s not giving them ways to gain the skills,” she said. “It gives them information about how to talk in general with a child, but the intervention walks the parents through exercises with a nurse or social worker where they can practice the things to do and say and learn how to anticipate questions.”
And the skills aren’t just useful during those first anxiety-filled weeks following diagnosis, she added. They’re coping skills that parents can use for the road ahead, helping them navigate through treatment, complications, hospitalizations, side effects, recurrence and more.
Lewis is eager to train nurse practitioners, physicians and other care providers to deliver the intervention to cancer patients in the months ahead, but at this point has run out of funding.
“We’re in this unique place,” she said. “We have a tested intervention that parents love but we don’t have a way to put it into place. I have the team, the materials, and I can train this over a three-day period. I just don’t have the money to do it.”
Editor’s note: Lewis is currently recruiting for another Enhancing Connection clinical trial, this time offering a telephone intervention to help both moms and dads learn how to talk about all types of cancer with their children. Parents interested in joining the trial can call 206-685-0837 or email email@example.com for more information.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at firstname.lastname@example.org.
Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.