You have just told your family you have metastatic breast cancer. Now it’s time to let your friends and coworkers know, right? Wrong! You need to think this through before you put it on Facebook or make an announcement at the Monday work meeting.
People often have misconceptions about cancer that has spread. They may think that breast cancer that has metastasized to other organs, often called “mets” for short, is now liver cancer or lung cancer. They may recall 20 years ago when a stage IV breast cancer diagnosis meant death was just around the corner. You may find yourself out of a job if you share this news in the wrong way at work. Friends you have counted on for years may pull away. So take some time to decide if and how to tell people. Keep these factors in mind, too:
You do not have to tell your friends or coworkers. Your health status is your information, and you can choose to keep it private. If you have one small spot of breast cancer in your bones or liver, this might be a good option. Doctors may be able to treat the met, and you may be able to keep to your usual schedule while feeling fine. Yes, you now have active cancer, but you can avoid some of the complications of potential workplace discrimination by keeping the news to yourself.
If you tell people in one friendship circle, expect the news to spread. You may think you can tell the people in your Sunday school class without your bridge club finding out, but that probably won’t work for long. Even in urban areas, “small world phenomenon” exists. Someone in your class has a cousin who lives next door to someone in your bridge club. Once the news is out, you will have to deal with the hurt feelings of the ladies you have known for 30 years in the bridge club.
You probably have some friends you can trust to keep the news confidential if you ask them not to tell people. The problem will come when a third friend asks why you have dropped out of a charity that you used to support or why you don’t seem to be your usual self. Your friend may be able to keep your confidentiality, but her vague replies will tell the questioner that something is badly wrong. Gossip will fill in with speculative details.
A decision not to tell anyone outside of your immediate family will be hard to maintain for long. So what can you do?
Get as many facts as possible before you share the news. Your doctors cannot predict the future, but they can tell you your options for treatment and the most likely side effects. Armed with this information, you can reassure your supervisor at work that you will still be able to do a good job, but that you will be using your sick leave more often for medical appointments.
Read about your protections under the Americans with Disabilities Act to learn about the kinds of accommodations you are legally entitled to. If you need to go on disability, having the facts about your diagnosis and expected treatments can help you and the human resources director come up with the best plan.
And when your friends say, “Let me know if I can help,” you’ll be able to say, “I’m going to need rides to the doctor’s office every Thursday morning. Could you organize people in our Sunday school class to help me out with that?”
Share face-to-face when possible with the people closest to you. Phone dear friends who live far away. These conversations will probably be difficult. Talking about such a serious diagnosis can be emotional for you and for your listener. In many cases, your more frequent doctors’ appointments and your persistent cough have already alerted your supervisor or friend that something is wrong, so they may be less shocked than you expect.
There is no right way to do this. If you cry easily, you don’t need to be stoic. If you are a “just the facts please” person, that’s OK too. Be yourself.
It’s OK to use modern technology to help you tell acquaintances. Once you have told your immediate supervisor and human resources manager at work, you can use email to let your work team know about your diagnosis and how it may affect your job. Your best friend since childhood may feel shocked to find out about your diagnosis on Facebook or in a Christmas card, but your circle of more distant friends may actually find an email more comfortable because it gives them time to think about how to respond.
Be ready for some ignorant and insensitive comments. People often don’t know what to say when they hear bad news. They may try to reassure you with platitudes. They may use religious language that makes you uncomfortable. They may even try to lighten the conversation with a joke. Think about the times you didn’t come up with the perfect response to someone’s bad news, and forgive people when they come off as insensitive.
When the time is right, let your friends know that you don’t want medical advice about the latest banana cure they heard about, or explain why certain language makes you uncomfortable. It’s OK to keep your distance from people who persist with insensitive behaviors even after you ask them to stop.
Be ready for amazing support. Every person I know in the cancer community has a story about someone who dropped her after finding out she had cancer, especially if the cancer is metastatic. Every person also has stories about people they hardly knew who stepped up with meals and childcare. You may be surprised about where the support comes from, but it will be there.
Metastatic breast cancer isn’t a problem that you can deal with this week and expect to be fine after that. It’s a long-haul issue. Your life span may now be measured in months or years, but either way, you will need emotional and practical support. You and your family needn’t go it alone. Think about the kinds of support that can help you. What do you most need? Someone to cry with? Someone to watch a funny movie with? Meals on treatment days? Lawn mowing on the weeks you have to travel to a distant cancer center? Rides for your children to soccer practice? Which of your friends are best suited to what you need?
You don’t want to burn anyone out, but when someone says, “How can I help?” you can say, “It would be wonderful if you could help me next Friday.”
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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.