You’ve received the news you never wanted to hear. You have metastatic breast cancer (MBC). Whether your cancer was already metastatic at the time of your diagnosis, or whether it recurred 20 years after an early stage breast cancer, finding out that the cancer has spread adds a whole new layer of fear to an already scary disease. Should you tell your family? If you do, how will you share such news? Here are a few issues to consider.
The people in your household need to know
Your spouse or the person who goes with you to the doctor already knows, but you may be tempted to spare others. Treatment for MBC is often gentler than for earlier stages because the doctor expects that you will be on it for the rest of your life. Although the details vary depending on the extent and location of the metastases, your doctor’s goal may be to keep you stable, not get you back to no evidence of cancer (NED). You may be able to skip telling people because you might look perfectly well.
However, you will have days when your treatments make you feel terrible. You will have days when you get down about your prospects. Your family deserves to know why your energy and mood fluctuates. If you have some sort of medical crisis, your family needs to be able to explain your cancer status and treatments to the emergency room physicians. Knowing whether it is your liver or your lungs that have been affected by cancer could save doctors valuable time in deciding what tests to run and how to treat you.
Think before you speak
I recently asked people I know with metastatic disease how to break the news to family. Almost everyone emphasized the importance of thinking through what you want to say. You need to gather the facts and understand them yourself before you try to explain them to others. If your doctor has given you an especially grim timeline, it is a good idea to get a second opinion from a specialist at a comprehensive cancer center.
There are many new treatments for MBC and clinical trials that might give you a longer life with good quality.
Jane advises, “Do some research and rehearse the telling [about your diagnosis] in your mind. I was able to have researched this disease, and its treatments, which provided me with answers that helped both me and my family. Helping them, helped me.”
Decide whether you want to speak to everyone together or separately
Bonnie said, “I tailored the information to each family member, in particular because our youngest was only 8 at the time. I feel that was the best approach because it allowed, perhaps invited, open conversation with each individual.”
Another woman arranged a conference call to make sure that everyone heard the same words at the same time. Each family has a different configuration, so there is no one correct way to do this. Consider the ages and personalities of involved, and if members of your immediate family don’t live at home anymore, think about the logistics of the best form of contact.
Get help to talk to children
What children can understand about illness varies considerably by age. Each child’s temperament is also different. The American Cancer Society has an excellent section about talking to children about cancer. Talking to a teacher or someone else who knows your child and the development stage he or she is in could also give you some valuable clues.
Bonnie said, “Our youngest daughter finally blurted out, ‘Mommy, is cancer contagious?’ It was then that I fully understood why that poor innocent child was afraid to hug me.”
This kind of misunderstanding is common, and you will want to talk to your children more than once because it may take them a while to figure out how to ask their questions.
You may be tempted to avoid distressing your children by just not telling them at all. However, children are very sensitive to the mood of the household. They can tell when something is wrong. If you don’t give them facts, they may come up with terrifying answers. Even when the news is the absolute worst from your point of view, and you may not live much longer, your children need to know that you will insure that they are taken care of. I have heard many adults talk about their own childhood experiences with a parent’s cancer. If no one ever explained to them what was happening, the adults’ silence created confusion and uncertainty. Sometimes no words are more hurtful than sad words.
Don’t get into timetables
Life expectancy for people with metastatic breast cancer is longer that it used to be. Tell your family about the treatments the doctor plans for you, but keep in mind that treatment for MBC will be guided by the tumor’s response. You might live for years on a treatment that allows you to keep your hair and go to work every day. Or that treatment may work for only a few months before the doctor has to try something else. I’ve known many people who can say, “My doctor told me I’d be lucky to live six months, and here I am six years later.”
Neither you nor your doctor can predict your life span, so don’t let your family push you for numbers. Even if you and your doctor have decided that you don’t want to pursue active treatment, you may be surprised by how much longer you live. I once met a woman who had been in hospice treatment for breast cancer twice, and each time improved enough to go home!
What about your other family members?
If you live in a distant city from your extended family, you have some different issues to consider. One person said she didn’t tell siblings for a long time because she didn’t want to worry them. Another said she told all her relatives right away because she wanted to have their support in prayer.
Although I didn’t have metastatic breast cancer, calling my far-away family to tell them about my inflammatory breast cancer diagnosis was a horribly draining and emotional experience. I found myself in the position of comforting and reassuring them. I’m not sure that there is any way around this unless you know you will be seeing them soon and can tell relatives in person. Families vary in how they communicate, but often if you don’t tell people, the grapevine will. Keep in mind — the grapevine rarely gets the details right! Once you have shared the first news, you can spare yourself repeating news by contacting people regularly through email or a website like CaringBridge.
Every family is different. Each has its own patterns of communication and support. You probably believe you can predict how your family members will react to your news, but you may be surprised. Some of the people I talked to for this article had feared sharing their news, and sometimes their apprehension was justified. Sometimes family members’ denial about the seriousness of the diagnosis caused stress. Sometimes people didn’t respect requests for confidentiality. However, more often people were surprised by how well sharing the news went. Their families pulled together to help them through a difficult time with humor and love.
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.