7 Steps for Sharing Your Kidney Cancer Diagnosis
You can’t control reactions to your kidney cancer news, but you can take steps to make the convo as comfortable as possible.by Sarah Ludwig Rausch Health Writer
As if processing a kidney cancer diagnosis isn’t hard enough, eventually you’re faced with revealing it to your friends, family, and probably others, too. Who will you tell? How much should you disclose? What’s the best way to break the news? Here we’ve got seven steps from two experienced therapists to help guide you on the next part of your journey.
1. Come to Terms With Your Diagnosis.
You’ll probably need to work through your own feelings before you tell other people about your diagnosis. “This is a rough time, so allow yourself to be human, to cry, to question, to wonder, and to make sense of the news,” says Claire Grainger, a licensed clinical social worker and clinical supervisor at CancerCare, a national organization based in New York City that provides free professional support and information to people with cancer. She says it could take several days or more to process everything and start thinking about your next steps.
Once you’ve digested the news, you’ll probably be itching to find out as much as you can about your kidney cancer diagnosis. You may be tempted to search every last corner of the Internet in your quest, but consider this: “I don’t advocate that patients do a lot of Internet research because it usually jacks up a great deal of anxiety and doesn’t settle it,” says Ellen Anderson, Ph.D., a licensed psychologist at Hartford Healthcare Cancer Institute in Hartford, CT. She advises sticking with one or two credible sources like the American Cancer Society or the National Cancer Institute.
Don’t push yourself into telling people too soon either. “It’s often too much to ask a person to manage their own emotions and, at the same time, try to manage the emotions of others,” acknowledges Dr. Anderson. “There will be time, and it may be best not to rush into trying to communicate too much, too fast.”
“The time of diagnosis is a judgment-free zone,” says Grainger. “Feel how you feel, allow your emotions, and be kind to yourself.” Sharing your news can wait as long as you need it to.
2. Figure Out Who You Want to Tell.
Who you decide to let in on the news is entirely up to you. Grainger suggests thinking about who you want to support you along your journey. “We all need each other, and cancer is a situation where holding hands or linking arms may strengthen you more than you can imagine,” she says.
It can be really helpful to sit down first with your main support person (partner, spouse, best friend, sibling, etc.) and go over who you both think are the best people to support you in this journey, Dr. Anderson says. “It’s about who really needs to know and who you want to know,” she says.
Dr. Anderson says it’s important to think about how your cancer will affect your immediate family, especially anyone who relies on you, like children and/or aging parents, since they will be impacted by your diagnosis almost as much as you are. Ultimately, you just have to do what you think is best for everyone involved. If you have kids at home, Grainger says she always advises telling them about your diagnosis. “They need to know what’s going on with your cancer, treatment, and what the side effects may be. Every question asked is a question that should be answered,” she says.
Grainger acknowledges that asking kids to keep a secret is difficult for them since they tend to not be able to keep secrets, so consider your kids’ age. If you decide not to tell your kids about your diagnosis at all, remember, someone else may. Plus, kids are a lot more observant than we often give them credit for, so even if they don’t notice your medical bills or cancer literature lying around, they will definitely pick up on the mood shift that will inevitably happen. For more tips about sharing your cancer news with your kids, check out this resource from the American Cancer Society.
Co-workers and/or Employers
Legally, you don’t have to share the news with your employer. That said, it may end up being more difficult to keep your condition under wraps than you anticipate, Grainger says, especially if you’re obviously undergoing treatment for your cancer. She notes that there may be protections under the Americans with Disabilities Act (ADA) that can help you at work, so consider consulting organizations with expertise in this area like triagecancer.org.
Dr. Anderson suggests first thinking through how much you want to reveal at work. Will your condition impact your job? Do you need support at work? Is it going to be difficult or stressful to keep your diagnosis to yourself? If telling people at work might be something you regret later, you may want to minimize how much you divulge. “Once you’ve told a few people, that information will be out there,” she cautions. “Talking about it in a measured way is wise. You can always add more and go deeper later on.”
Keeping It to Yourself
You may want to keep your kidney cancer diagnosis to yourself (and probably your partner, if you have one). Consider that letting a few trusted friends or family members in on what you’re going through could help reduce your anxiety, Grainger says.
Be aware that you may not have all the support you need during a time you really need it, adds Dr. Anderson. “I wouldn’t be too afraid to share information because I think, generally, most people will want to be supportive,” she says. “But everybody’s different and some people are pretty private and that’s what they prefer.” In the end, you should do whatever makes you comfortable.
3. Plan What to Say.
How do you decide how much to share? First of all, keep in mind that a cancer diagnosis is usually “a slow gathering of information” as you get test results and make treatment plans, Dr. Anderson says, so you might want to disclose everything gradually. But she says there’s no “right” amount of information to share. “It’s really a personal choice.”
Grainger suggests writing down what you want to say—start with two or three points and go from there. You can also check out online resources—Dr. Anderson recommends Cancer Support Community—to find guidance on how to talk to your kids or loved ones.
It might help to think through how much you understand about your diagnosis and the treatments you may need before you talk to other people as well, Dr. Anderson says. If you’re not really sure what’s going on with your cancer—for instance, you haven’t had surgery yet, so your doctor doesn’t know if the cancer is contained in your kidney or if it has spread—you may want to keep the information you share limited or even wait to tell people. “It’s anxiety provoking to have another person ask questions that you might not have considered or that you don’t have the answers to,” says Dr. Anderson.
4. Decide How to Say It.
Breaking your kidney cancer diagnosis news is always better in person, if possible, Dr. Anderson says. Think about how you want to tell each person or group. Do you want to talk to them individually? Take your best friends out for drinks? Tell your co-workers over a lunch out? Go for a family (or extended family) picnic? Invite your best friend to a special place to talk? Call or video chat with faraway friends or family? Do you want someone else there for moral support?
There is no right or wrong way to do this, so don’t stress over it. “I encourage you to follow your inner voice here and do what works for you. You are now the leader of this pack,” says Grainger. You may find it helpful to actually rehearse what you want to say too, she notes.
5. Prepare for a (Possibly Bad) Reaction.
“Remember, just as you are slowly making sense of your news, so are the people you are telling,” says Grainger. You may get reactions ranging from shock to sadness to encouragement to the person you’re telling actually walking away from you. “We never can gauge someone’s reaction,” Grainger says. But if you’re prepared for a reaction of some sort, she says this will help you “allow friends and family to ‘feel how they feel’ as they grapple with your news.”
6. Be Ready for Uncomfortable Comments.
Dr. Anderson says other people’s reactions to a person’s cancer diagnosis comes up in therapy a lot. Some people may ignore your diagnosis altogether, while others try to relate with an unhelpful story about their aunt with breast cancer or ask you invasive questions. “I think most people want to be helpful, they just don’t know how in their anxiety,” Dr. Anderson says.
“Cancer can create awkward moments where well-intended people may say something ignorant, cringeworthy, or hurtful,” agrees Grainger. “How you react is your power.”
Plan ahead for these moments by thinking about what you would like to hear from people, Dr. Anderson advises. Then when someone is responding in a way you find intrusive or frustrating, you can guide them to respond in a way you need. For example, she suggests you could say something like: “What really helps me is when people say positive things to keep my spirits up,” or “It helps me a lot to not talk about the cancer in detail.”
“One of my favorite lines is ‘silence can’t be quoted,’” says Grainger. You only need to share what you’re comfortable sharing, so if you don’t want to answer a question, say so (or stay silent). Grainger also says it’s good to handle all this with some grace and recognize that plenty of people who reach out “may be having trouble finding their words, but their hearts may be in the perfect spot.”
7. Look Into Using the Internet to Give Updates.
It gets tiring (and annoying) to have to give people the latest updates over and over and over. Instead, consider keeping everyone in the loop at once by using a website like CaringBridge or Cancer Support Community’s MyLifeLine. You can even start a blog. “Writing about your cancer may be freeing,” Grainger says. “Everything you are carrying inside you is suddenly out—and free—and on the paper.”