by Jen Uscher
During the few first weeks and months after a diagnosis of metastatic breast cancer, you may be in shock and find it difficult to cope. In the beginning, it’s not unusual to be consumed by fears about the future, how your diagnosis will impact your loved ones, and whether disease symptoms and treatment side effects will affect your ability to function. But these feelings can get better as you learn more about how to manage them.
It may help you to know that there are more sources of support and a larger community of people living with advanced-stage breast cancer than ever before. In 2017, researchers at the National Cancer Institute estimated that more than 150,000 women in the United States were living with metastatic breast cancer.
Roz Kleban, a licensed clinical social worker who works with patients being treated for breast cancer at the Breast and Imaging Center at Memorial Sloan Kettering Cancer Center and a member of the Breastcancer.org Professional Advisory Board, shares these eight tips to help make things a little easier as you adjust to your diagnosis:
1. Take your time
You may feel disoriented and afraid when you first find out you have metastatic breast cancer. Give yourself plenty of time to process it all. Just allow yourself to feel your emotions, and don’t pressure yourself to make decisions right away. It might take a while before you’re ready to educate yourself about your diagnosis, and that’s okay. For many people, only time can help with regaining some feeling of normalcy. Eventually, you can see that things are settling down, you’re moving forward with treatment, and you’re continuing to live your life.
“At first you’ll be in shock and disbelief. The disbelief can be with you for a long time but this isn’t a bad thing, it protects you from the frightening place you’ve found yourself in. Once that has worn off, you can begin to accept what’s happened and work on how to create a good life in this new reality.” – Leapfrog, in the Stage IV and Metastatic Breast Cancer ONLY Forum
2. Make sure you’re completely comfortable with your medical team
Think about whether you have good communication with your doctors and how you can work together with them to develop a treatment plan that’s right for you. If you feel that a particular doctor isn’t treating you respectfully and answering your questions or doesn’t have enough experience with metastatic breast cancer, don’t hesitate to look for a new doctor. Also, remember that your treatment plan isn’t written in stone. You can always talk with your medical team about organizing your treatment so that you can have the best possible quality of life.
3. Find support from others with metastatic breast cancer
No one is going to understand what you’re going through like someone with the same diagnosis. A good support group, online or in person, can help you feel less isolated and more hopeful, and the group members may be able to share their coping strategies with you. When you’re first diagnosed, it may be encouraging just to see that other members of the group are doing normal things like traveling, working, and taking care of their children or grandchildren. To find a group that meets in person, try contacting a local cancer hospital. In addition, organizations like Share Cancer Support and Cancer Care offer telephone support groups. There are also a growing number of online forums for people with metastatic breast cancer, including the Community at Breastcancer.org.
4. Seek out a social worker
If you haven’t already met with a member of the social work team at the hospital where you’ll be receiving cancer treatment, you may want to seek one out. A social worker can talk with you about any concerns you have about coping with your diagnosis and connect you with a wide range of hospital and community services. For instance, they can help you find resources for financial assistance, insurance issues, finding and paying for a wig, transportation to medical appointments, and guidance on handling situations that come up at work. Many social workers also provide counseling for patients and family members and lead support groups.
5. Look into clinical trials
Clinical trials are research studies that evaluate whether a new treatment is safe and effective. When you participate in a clinical trial, you can get access to a treatment that may be beneficial to you but that isn’t otherwise available because it hasn’t been approved by the FDA yet. Typically, you’ll receive extra medical care and attention during the trial. To find out if there’s a clinical trial that’s right for your unique situation, talk with your doctor. You can also search for clinical trials by using the Metastatic Breast Cancer Trial Search tool.
6. Keep moving
If you were physically active before your diagnosis, don’t stop now. People living with metastatic breast cancer often discover that regular physical exercise makes them feel stronger, less fatigued, and less stressed. Working up a sweat can also help you gain a sense of control and a feeling of accomplishment. Ask your doctor about exercises and activities that are appropriate for you.
7. Get peace of mind
If there’s something in your life that feels unresolved and it’s causing you stress, try to address it if you feel up to it. For example, you may want to try to repair a strained relationship with a family member or to make sure your will and advanced directive are up to date. Tackling these things sooner rather than later may bring you some peace and a greater sense of control.
“[Take the opportunity] to get your affairs in order … It’s something productive that you have control over in a time when you will have very little control. The peace that planning brings is immeasurable. It’s like paying off debt.” – MaineRottweilers, in the Stage IV and Metastatic Breast Cancer ONLY Forum
8. Focus on what brings you the most meaning and joy
Ask yourself: What could I do today to make this a better day? What gives me the most meaning, happiness, and pleasure? This might mean taking a vacation now rather than putting it off, continuing to work if you’re able to, or spending more time with the people you love. Of course, you’ll have days when you’re struggling and you feel discouraged. You may need to pay more attention to how you spend your time and energy than you did in the past, and to prioritize the things that matter most. You’ll see that it is possible to find joy and live a full life with metastatic breast cancer.
“Prioritize joy. Make your life worth living. Care for yourself. Take loving care of your body and soul. Get rid of old anger, hurt, sadness, and trauma. Go see a therapist, a guru, a priest, or a shaman – whatever does it for you in order to get your mind and heart in order. Find peace.” – NineTwelve, in the Stage IV and Metastatic Breast Cancer ONLY Forum
Roz Kleban, LCSW-R, is a clinical supervisor and program coordinator at Memorial Sloan Kettering Cancer Center. She works with patients being treated for breast cancer by the Breast Medicine and Breast Surgical Services at the Evelyn H. Lauder Breast Center and the MSKCC Imaging Center. Roz sees patients as individuals and with their support systems, and facilitates groups for patients at all points along the disease continuum.