Talking about Cancer
Talking about your cancer can be very difficult to do. Those around you will have a lot of questions—about your cancer, your treatment, how you feel, and what you need. Your healthcare team will tell you a lot of information about your condition and might ask you to make decisions about your treatment. And you might be wondering how to tell people how you feel, physically and mentally. It can be overwhelming. If you are not sure exactly what to say, or how to say it, or even when to bring it up, know that you are not alone. Many people with cancer feel this way. It is important to know that there is no right or wrong way to talk to people about your cancer. Each relationship is unique and has its own dynamic. We hope the information below helps you find what will work for you.
Talking with your healthcare team
Talking with your cancer care team is very important. The information they provide will help you make important decisions about your treatment. And letting your team know about relevant matters in your life will help them understand the unique way in which lung cancer affects you. Being a new patient and getting introduced to the many healthcare providers who make up your treatment team may be a lot to take in. Feelings of fear and anxiety may make it hard to understand and remember what they say during appointments. The tips below can help you feel in charge and more prepared during your appointments. Your caregiver or a family member can help you at appointments too.
Keep a list. Know the names of each member of your cancer care team, their specializations, and their phone numbers.
Speak up. If you do not understand something, say so. It might help if you tell your doctor specifically what you need, such as a more detailed explanation or less medical jargon. Check to make sure you have understood correctly. You can say things like “What I hear is that this kind of cancer usually responds better to surgery than chemotherapy or radiation. Am I understanding this correctly?”
Ask questions. You will have many questions throughout the various stages of your treatment. Asking questions will help you get the information you need and help you feel in control.
Put it on paper. Jot down the questions you want to ask at your next appointment and take the list with you. Take notes to help you remember what the doctor or nurse said. Bring along a friend or family member who can make notes and help interpret what you were told.
Record it. Instead of writing things down, you may find it easier to just listen and make an audio recording of your appointments. You can listen to the recording later if you are unsure about anything that was discussed. If you choose to do this, always inform your healthcare provider before you hit record.
Share. Let your healthcare team know who the important people in your life are and to whom they may or may not communicate. Tell them if you want detailed information on all aspects of your medical situation or if you prefer general information only.
Talking with family and friends
Talking to your family and friends can help you process your own feelings about your cancer. When you have decided to let them know, think about how much you would like to share with them and how. You may choose to speak to some close family and friends yourself, and have a loved one inform some others. Learning about your cancer diagnosis will also be overwhelming for your family and friends. They will cope with the news in different ways and may need time to come to terms with their own feelings about your diagnosis.
Be yourself. Although this may be a very difficult conversation, keep in mind that you and the person you are speaking to are still the same people.
Be honest. You should tell your family and friends as little or as much about your cancer as you are comfortable with. But you should not feel that you need to hide any details to protect them from painful feelings.
Ask them what they already know. Some people might know bits and pieces about your diagnosis or treatment. Instead of starting from scratch, you may find it easier if they first tell you what they already know. Then, you can fill in the gaps as you wish.
Have someone with you. If you have already told a close family member or friend about your diagnosis, it may help to have them with you for support during this new conversation.
Do not worry if they are quiet. Some people may not know what to say right away, and some may be afraid of saying the wrong thing. Sometimes being with each other quietly may be enough. If you are uncomfortable with the silence, you can ask them what they are thinking or if there is something they would like to know.
Talk about how they can help. Your family and friends will want to support and care for you during this time. But they might not know how. Let them know about things they can help with, like running errands, doing chores, going with you to appointments, or lending an ear when you need it.
Let them know if there are things they should not do. Some people may have many questions about your health; but you may not always want to talk about it. With some others, this may be the beginning of a conversation that will continue over the course of your treatment. Let the person you are speaking with know if it is okay for them to ask you about your health, or if you would rather they wait till you broach the topic with them first.
Talking with young children
When talking to young children about your cancer, take into consideration their ages and developmental stages. It is also essential to tell them the truth. Your children will sense something has been kept from them if they overhear you telling others different or more information. Social workers at your children’s school and at your cancer centre can help you decide what to say to your children. It may also be possible to set up a tour of the location where you will have your appointments and treatments. Seeing this place and meeting the staff may relieve some of your children’s unspoken anxieties and fears about what you may experience during treatment.
Do not be afraid to use the word cancer. Clearly describe where your cancer was found. Some children may find it helpful if you draw simple pictures to show them where the lump is.
Dispel myths. Tell your children very clearly that they did not cause your cancer, and that it is not contagious. Although your children may not ask you about this, many children have unspoken beliefs that their past misbehaviours or outbursts harmed you in this way.
Talk about your treatment plan. You can describe radiation treatments as being like x-rays and chemotherapy as special medicine. It is, however, important to distinguish that your cancer treatments are not the same as your children’s medicine or their dental x-rays, for example. Tell them about how often you will be at appointments, and if you will need to spend nights at the hospital.
Prepare them for side effects. Help your children understand what to expect when you come home after your treatment. Let them know about some of the side effects you may have, like fatigue, hair loss, and nausea.
Tell them who will take care of them. A simple explanation of the plans in place for their care and day-to-day routines will go a long way in making them feel more secure and unafraid.
Keep the conversation going. Encourage your children to come and talk to you if they hear something that differs from what you have told them. Assure them that you will always be honest. At the same time, explain to their caregivers, teachers, and your family members what you have told them. Letting the people around your children know this information will help them support your children and keep an eye out for any changes in their mood or behaviour.
Your cancer diagnosis and treatments are very personal matters. Who you tell, how much you say, and how you tell them will vary based on where you work and your relationships there. You may want to tell all or some of your coworkers, or only your supervisor or someone in Human Resources. At the least, you will have to explain any long absences or changes to your appearance. Worrying about whether telling people at work will make things awkward or make people avoid you is completely normal. On the other hand, you may find it therapeutic and get support from your colleagues when you tell them. You will also have to consider how you tell people at work about your cancer. You could tell a few people in person, or more at a bigger meeting. You could send an email, or have an email sent on your behalf.
When you do not want to talk
Although it is very important to keep an open dialogue with your loved ones, it is understandable if you do not want to talk about your health with everyone or all the time. You may feel that it is easier to cope if you focus on your activities and keep busy. (It is important, however, to distinguish this sort of coping mechanism from intentionally bottling up your feelings.) In these situations, it is okay to tell people that you do not feel up to talking. You could let them know that you would rather talk about or do something else right now, or that you will feel more comfortable talking to them later. In certain situations, it may be easier for you to provide a little bit of information about your health or how you feel and then change the topic.