How to Talk to Your Family About Your MBC Diagnosis

If you just found out you have metastatic breast cancer, you’re probably still processing the news yourself. No wonder you’re tempted to hold off on saying anything for now. Sooner or later, though, you’ll want to share the news with at least a few family members, including your children. The thought of that conversation may be filling you with angst.

“We have an instinctive need to protect our children from bad news,” says Sandy Kotiah, MD, director of The Neuroendocrine Tumor Center at Mercy Medical Center in Baltimore. “Just getting the diagnosis and figuring out treatment can be overwhelming for a person with metastatic breast cancer.”

It’s okay to hold off if you don’t feel up to having a conversation right now. “The decision of when you tell your family is up to you,” Dr. Kotiah says. “Some people choose to wait a few weeks, and others bring their family to their first appointment to be emotional support and a second set of ears.”

How to Start the Conversation

For Berit Griffin, who works in the travel industry in Plymouth, Minnesota, telling her father and sister about her metastatic breast cancer diagnosis felt especially difficult, because her mother had died from multiple myeloma two years earlier. “But, I wanted them to know right away,” Griffin recalls. “I wanted them to have some context and to have a knowledge of what was going on with me.”

Griffin, who was 35 when she was diagnosed in 2017, receives treatment at Mayo Clinic. As part of her ongoing care, she has a CT scan of her chest and pelvis every four months and keeps her family updated about the results. “I don’t believe in keeping things secret,” she says. “I tell them everything.”

Keep these tips in mind once you decide when to share the news.

Schedule a Time for the Conversation

When Laura Crandon, first diagnosed with breast cancer in 2016, learned that it had spread to her brain, she worried about telling her husband and children. At first, she wasn’t even going to share the news with her younger son, then a freshman in college. But, her best friend encouraged her to do so. Crandon decided that rather than just deliver the news of her diagnosis during a normal conversation, she would ask her sons to let her know when they had time for a talk.

“Asking them to set aside time to have a conversation and prefacing it by saying it would be about something serious made sense,” Crandon recalls. “Otherwise, every time I was talking with my children, they might wonder what I was going to shock them with this time.”

Prepare in Advance

Ahead of time, write out some questions you think family members might ask, along with your answers. “This can be very helpful,” says Elizabeth Shaughnessy, director of survivorship and supportive services at the University of Cincinnati Cancer Center. “It is a very emotional topic. Just the stress of having a conversation can cause the release of stress hormones, and this can make you forget what you wanted to say.” Having the answers on paper as a guide may also be helpful.

Practice

Sharing news that may be almost incomprehensible even for you to understand is hard. Before you do, consider practicing what you want to say with someone you’ve already told. They can give you honest feedback about your tone and choice of words.

Be Honest

During the conversation, tell the truth, but don’t be blunt, says Norah Lynn Henry, MD, PhD, a breast medical oncologist at Michigan Medicine and professor of internal medicine at the University of Michigan Medical School in Ann Arbor. She says it’s also okay to say you don’t know the answer to a question.

Be Truthful, Yet Reassuring

“Children are pretty savvy, and they know when something is going on,” Dr. Henry says. Whether you are telling little kids or older ones, you’ll want to convey that what you have is treatable. You can explain that the treatment could have some difficult side effects, but that it’s still working to help you get better.

Children younger than 9 years old usually don’t need as many details as older kids and teenagers. With teenagers, you can talk more in depth about how your cancer will be treated. Try to speak calmly, and encourage them to ask more questions if they have them.

Find Support From Mental Health Experts

“I recommend cancer support groups, as well as one-on-one peer support,” says Alyson Moadel-Robblee, PhD, founding director of the Bronx Oncology Living Daily (BOLD) cancer wellness and support program at Montefiore Einstein Comprehensive Cancer Center in New York. “And, reach out to see if there is a social worker who your child could talk with.”

Common Questions Your Family and Kids May Have

Older family members may first ask how bad it is, Kotiah says. They may also ask if the doctor gave you a timeline, how sick it will make you, and how often you’ll need treatment. “These are hard questions for you to answer, because you just don’t know — hence, the uncertainty and worry about the future,” she says. “Having a plan of attack can help calm some of those fears.” This is especially true when talking to your children.

Here are some questions your child might ask, says Dr. Shaughnessy:

• “Are you going to die?” “Tell your child that you are working with doctors who are experts in breast cancer, and they are going to do everything they can to help you,” says Dr. Moadel-Robblee. “Explain that there are a lot of options and a lot of treatments in mind.”
• “Will I get cancer, too?” Reassure your child that cancer is not contagious.
• “Is it my fault that you got cancer?” Be sure your child knows that it is no one’s fault, that they did not do anything to cause the cancer, and that you can still do things together, even if it’s just watching a movie or reading a book.

If the conversation leads into a discussion of death, be clear and specific. Explain that it is okay for your child to have a lot of different feelings, and avoid phrases like “passing away” or “sleeping forever.”

Some questions family members ask may seem impossible to answer, says Henry. “The prognosis depends on so many factors, and we really don’t have a sense of how things will go at first,” she says. Explain that you don’t know, but the doctors are taking very good care of you, she advises.

This first conversation is just the beginning of your family’s involvement with your care. Once you’ve shared the news, you and your family can begin to focus on how you can all work together during this period.

It’s also fine to suggest to a partner or grown child that you’ll need help, says Shaughnessy. “You could say, ‘I will need help setting up and attending appointments and treatments, and it would also be helpful if someone could arrange for food and transportation for me.’”

“Approach the news of your diagnosis with hope, since hope is a reasonable place to start from,” says Jane E. Carleton, MD, associate chief of clinical affairs at the Northwell Health R.J. Zuckerberg Cancer Center in New Hyde Park, NY. “Open the window to hope. When you have hope and you share it with your family, there are a lot of good days.”