Building your community of support for metastatic breast cancer
If you’ve been diagnosed with metastatic breast cancer, we know that some days can feel like a roller coaster of emotions and life details. Keeping a group of supportive and caring people in your life can help ease the pressure.
Support comes in many forms. For instance, it can help to have a friend or family member with you at appointments to take notes, to drive you to and from treatments, or to help with daily chores when you don’t feel up to it. Knowledge can also be supportive. Reading information about your diagnosis and treatment options and discussing it with your doctor can bring clarity if you’re feeling uncertain.
A support community can include
- your healthcare team
- others living with metastatic breast cancer
- a professional counselor or therapist
- legal and financial professionals
- nonprofit organizations such as LBBC.org
Your support community can even include your pet!
It’s important to know that no matter what’s happening, you are never alone. The LBBC community is here for you with medical information, guidance, and connection for your emotional well-being, and resources for your day-to-day concerns.
We work with leading healthcare, wellness, legal, and financial professionals to provide you with trusted information about your medical, emotional, practical, and lifestyle concerns. We offer our programs and services in different formats so you can access them when and how you need them. If you miss a live webinar program, don’t worry; we often record our sessions so you can watch or listen to them at a time that works for you. Most of our programs and services are offered at low or no cost to you.
Our resources are available in these ways:
- Online: Learn the latest medical and quality of life updates from leading experts in the field. Read medical information, attend a live virtual event or watch the replay later.
- By phone: Reach out to our Breast Cancer Helpline to speak with someone who’s been where you are now.
- In print: Our Metastatic Breast Cancer Series of publications make complex medical information easy to understand to help you learn about your diagnosis, treatment options and more. Topics cover everything from getting through the first few weeks after diagnosis in the Guide for the Newly Diagnosed to nonmedical means of coping with side effects in the Guide to Understanding Complementary Therapies. You can read our guides online or request free print copies.
Learn about Additional Resources including information and support organizations and a free, evidence-based breast cancer information app.
Telling people about your diagnosis and asking for help
Telling friends and loved ones that you have metastatic breast cancer may be one of the hardest conversations of your life. It’s important to do this on your own terms in a way that’s most comfortable for you. You’re in control of how, when, and to whom you want to share your diagnosis.
Writing down what you want others to know about your situation can sometimes help you express your feelings more clearly. Thinking ahead of time what you want to say also allows you to decide how much information you want to disclose. If you’re a private person, you may only want to share the basics. Or, you may find that sharing more details and hearing how others respond can help you clarify things that may have felt uncertain.
It is absolutely OK to want to wait until you make sense of your diagnosis before you tell others. You may feel more comfortable telling family and friends after you’ve done your own research and talked with your doctors about treatment options.
Figuring out what to say and how to say it can feel overwhelming for some people after a metastatic breast cancer diagnosis. You can always ask your doctor to refer you to the social worker at your cancer center. An oncology social worker can support you in planning how and when to tell people about your diagnosis. Sometimes, it’s possible to set up a time to tell loved ones about your diagnosis with the social worker present for extra support.
If people around you seem anxious about what you’ve told them, explaining what you need from them can put them more at ease and give them something helpful to focus on – with a “win-win” of supporting you, too. Oncology social workers can also help you find the words to ask for help and communicate what you need from loved ones. Communicating your needs can help you conserve energy for what you want to enjoy most.
Dealing with people’s reactions
Predicting other people’s reactions to news about your metastatic breast cancer diagnosis isn’t always possible. At a time when you need comfort, you may find yourself comforting others. For some people, the thought of disrupting the lives of family and friends, or fear about how they will respond, can make it hard to tell them what’s happening. Remember that the people closest to you are sometimes the best support system.
A common reaction you may hear is “Let me know how I can help.” Take it as a sincere offer and suggest something specific if you can.
Many of the people you tell will want to be there for you. But some may surprise you by the way they react to your news, some may even pull away. Remember:
- Some friends and family may need time. They may feel sad, angry, scared, or confused. Trying to help them through it can be emotionally triggering and exhausting on top of everything else you’re experiencing — and it’s not your responsibility. It is completely OK to enlist the help of your cancer center’s social worker in directing friends and family to other sources of support.
- Sometimes people want to help, but don’t know what to do or say. We’ve created a page on how to support a loved one with metastatic breast cancer so you can share it with friends and family.
- Some people will respond in an unsupportive or insensitive way. Most of the time, insensitive remarks or reactions are grounded in the other person’s fear and discomfort. If someone says something to you that’s emotionally upsetting, it can help to talk to a professional counselor or others living with metastatic breast cancer for support.
It may be helpful to plan ahead for how you want to respond to insensitive reactions. It may be as simple as saying you prefer to discuss your situation with your medical team. Be direct. Consider saying, “This is not helping me right now.” If someone is not helpful to you, it is OK to set boundaries.
Managing metastatic breast cancer is ongoing. It’s unlikely that you will have only a once-and-done conversation with those you care about. It’s up to you to decide how often you want to update people and in what way. Some people find it useful to go online to send updates to friends and family so they don’t have to repeat information over and over. Others prefer having a designated person who gets updates and then shares them with the appropriate people.
- Surround yourself with good listeners.
- If it’s comfortable, be as open as you can about what you are thinking and feeling. Some people may be afraid to ask.
- Avoid people who make you feel uncomfortable.
- Ask others living with metastatic breast cancer about resources they find helpful.
- Be specific about what you need. For instance, “I need someone to take notes at my next appointment,” or “I need help with the grocery shopping.”
- Be specific about what you don’t need. If people try to do something for you that you would rather do yourself, let them know. If you want to talk about something other than cancer, let them know.
- Sometimes you need people to just be present with you instead of performing tasks for you. Tell people when you need them to stop “helping” and start listening. Say, “What I need the most right now is for you to sit with me, look at me and listen to me for a few minutes.”
- If asking for help feels very difficult, talk with people who put you at ease—a partner, friend or healthcare provider—and ask for tips on asking for help.
- If someone starts to tell you stories or give you advice you don’t want to hear, ask the person to stop. Don’t be afraid to be blunt. Say, “Please stop. This is not helpful to me.”
- Call LBBC’s Breast Cancer Helpline and talk with someone who is living with metastatic breast cancer about how they asked family and friends for help and got support.
Where can you find support?
Sometimes we want support outside of family and friends. Your treatment center is a great place to start. Let your doctors and nurses know how you’re feeling, and ask to be directed to the center’s oncology social worker. If the center doesn’t have a social worker on staff, ask for referrals to mental health professionals in your area who specialize in serious health conditions such as cancer. This may be a social worker, psychologist, counselor, or psychiatrist you visit for one-on-one appointments.
If you feel comfortable in groups, ask your oncology nurse or social worker to recommend a metastatic breast cancer support group where you can connect with others experiencing what you’re experiencing.
If you already belong to some supportive social groups, these groups can be very helpful after a metastatic breast cancer diagnosis. You may find great comfort in your religious or spiritual communities. Talk with members of your church, synagogue, temple, or mosque. If you’re part of a yoga class or meditation group, these can also be very supportive communities.
Complementary therapy practitioners such as acupuncturists, massage therapists, art therapists, or guided imagery practitioners can provide great support after a metastatic breast cancer diagnosis. Expressive writing coaches and groups can help release emotions and provide connection. Visit our complementary and integrative medicine for metastatic breast cancer page to learn more.
When things feel more stable than the initial overwhelm of diagnosis, some people living with metastatic breast cancer feel connection and support through volunteering with local service organizations to help others in the community. This can include anything from helping at a local food bank or church yard sale to volunteering at a pet adoption center.
You can also find supportive connection through volunteering for organizations that help others living with metastatic breast cancer, including LBBC.org.
Sometimes you just want to talk with someone who knows what you are going through. Ask your healthcare team for the names of breast cancer groups that can connect you directly with women affected by metastatic breast cancer. At LBBC, we offer a Breast Cancer Helpline, staffed by trained volunteers who are living with metastatic breast cancer. They’re here to listen and help you think through your questions and concerns.
Whatever support strategies you decide to do, it can help to have a circle of caring people who can be there with and for you. Sometimes that involves talking about your cancer. Other times, just being together is enough.