Living well with metastatic breast cancer means different things to different people. But living well and living fully are very possible. From the day of your diagnosis forward, you may make small and large changes to your habits, routines, and activities to address the challenges of living well with metastatic disease.
There may be times you fear for the future, or lose confidence in your body and in the people who support you. These are normal responses to managing ongoing illness and grieving the small and large losses metastatic breast cancer can cause. Let yourself experience these emotions. You are not alone. Ask for help if you need it. You might even decide to seek out others living with metastatic breast cancer. Many people gain great strength from talking with those who share in the experience.
As much as caring for yourself is about controlling the cancer medically, another part of living with metastatic disease is feeling in charge of your everyday well-being. Knowing what makes life meaningful to you may help you as you choose medical treatments. Ask, will a certain treatment prevent me from doing the things I enjoy? Is the cost of losing that activity high or low? Everyone is different, so you may choose a treatment that others turn down – and that’s OK. Talk to your doctor about your goals. You may be able to take treatment breaks for special activities, like travel or family events.
Your everyday well-being, often called quality of life, can be broken down into four parts: physical, emotional, social, and spiritual. Finding a balance in each may help you care for yourself.
• Physical support helps you maintain physical strength, flexibility, and wellness. Simple exercises like walking, as well as more strenuous exercise like yoga or weight lifting, help you reconnect with your body, improve your mood, and make you feel better physically. Your care team can help you with a regular exercise plan.
Palliative care and pain management are also key to maintaining good physical support. Therapeutic massage, pain medicine, and complementary therapies are other options to consider.
Part of living with metastatic disease is feeling in charge of your everyday well-being.
• Emotional support may help you cope with the stresses and anxieties of living with metastatic breast cancer. At times, you might feel disconnected, isolated, or uncertain about the future. Consider taking part in programs or support services, like counseling, psychotherapy, or support groups. You might take classes or join clubs that support your interests. These activities may help you connect with others and offer you ways to cope with your emotions and stay engaged in things you enjoy.
Counseling and individual therapy offer you the chance to voice concerns you keep to yourself in a safe, nonjudgmental setting. Many people withhold fears or worries to avoid upsetting or burdening others. A counselor or therapist is someone outside your usual life you can talk to. If you begin to feel overwhelmed by your diagnosis and the changes in your life, seek support right away. Don’t be afraid to try a few different providers. It may take time to find the right therapist for you.
Support groups provide a place to meet and talk with others coping with breast cancer. Talking with people in similar situations may help ease isolation and foster understanding. Support groups are also a good way to learn about new resources.
Not everyone feels comfortable in every support group. Much depends on the people in the group. If you want a support group but the first one you try doesn’t meet your needs, seek out another. It may help to decide what kind of peers you want in your group, such as people with the same diagnosis as you, people your age, or a group open to people with all kinds of metastatic cancer. For a list of support groups for metastatic breast cancer, visit mbcn.org/support-resources.
Peer counseling services allow you to talk to someone with a metastatic breast cancer diagnosis who has been in treatment like you. When you are first diagnosed, it may be hard to imagine living months or years with metastatic disease. Many people find that talking to someone who has done just that eases worries. You can be matched with a trained volunteer with metastatic breast cancer through Living Beyond Breast Cancer’s Helpline by contacting lbbc.org/helpline or (888) 753-5222. Or, refer to the Metastatic Breast Cancer Network’s website, mbcn.org, for a list of available telephone resources.
• Social support provides connection to maintain a healthy emotional life. Having friends, family, or peers for emotional support, as well as a social life outside of cancer, may help you feel happy and enjoy a full life.
Scheduling time with family and friends helps you make sure you get to see the people most important to you. There may be times when treatment schedules and doctors’ appointments get in the way, so making dates can help your relationships stay on track.
Joining an online community offers active, 24/7 communication with people living with metastatic breast cancer. These forums may be very helpful if you live in a remote place, have a busy schedule, or simply feel more comfortable talking about your challenges online. Many breast cancer organizations offer email newsletters through listservs that provide news about treatments and upcoming events, such as webinars.
Attending workshops, conferences, and classes offered by breast cancer organizations and hospitals can help you learn about new treatments and clinical trials, or get your questions answered. They also allow you to meet and network with others living with metastatic breast cancer. Many are available free or with scholarships.
• Spiritual support may help you find a sense of calm, peace, or deeper faith. If you are a spiritual or religious person, your diagnosis may have left you feeling disappointed, angry, or uncertain. Talking with a religious leader or a spiritual counselor may help you explore your feelings.
Spirituality is different for everyone, and comes in the form of traditional religious practices, as well as devotion to an activity or purpose, such as community service or art. Church and prayer groups are available at many cancer centers, hospitals, and churches, and may even focus on metastatic cancer. Spiritual counseling or guidance is offered by both traditional religious institutions and holistic wellness centers.
These activities may also help you find calm:
- Volunteering for a breast cancer or other organization may give you a new sense of purpose, or give you a break from thinking about breast cancer.
- Personal activities like art, music, sports, or writing can be a great outlet for stress, and offer you time alone to process news, decisions, or emotions.
You may want to consider your relationships and decide whether they bring you strength and comfort. Sometimes you may need to make the decision to pull away from relationships that cause you sadness or stress. It is OK to tell people when what they’re saying is not helpful. It’s hard for some people to say, “I’m here for you,” and leave it at that.
While metastatic breast cancer will always be with you, you can still embrace a full life that feeds your mind, body, and soul.
Reprinted with permission from Living Beyond Breast Cancer’s Metastatic Breast Cancer Series: Guide for the Newly Diagnosed. 3rd Edition © 2016. For more information about this guide and other publications, please visit Living Beyond Breast Cancer’s website at LBBC.org or call (855) 807-6386.
This article was published in Coping® with Cancer magazine, January/February 2018.