What to Do After a Diagnosis of Metastatic Breast Cancer

What to Do After a Diagnosis of Metastatic Breast Cancer

Learning you have metastatic breast cancer can be overwhelming. Right now, you may be feeling and thinking many things all at once, and life may feel out of your control. It is natural to ask: Who can help me? What happens next? What do I do now? 

About 155,000 people – women and men – are living with metastatic breast cancer in the United States. What was once a rarely discussed disease is getting more public attention through the efforts of people with metastatic breast cancer who work to educate the public and to advocate for more treatments to extend lives. With the help of organizations like Living Beyond Breast Cancer and the Metastatic Breast Cancer Network, people with metastatic breast cancer are finding that they, like you, are not alone.

Metastatic breast cancer is life changing, and managing the disease will now be part of your daily life. Rest assured that advances in research and treatment have made it possible for many to live longer, more fulfilling lives than in the past. The disease varies from person to person, and your treatment experiences will be unique.

Coping with Your Diagnosis

No matter how familiar you are with breast cancer, the next few days, weeks, and months will likely be challenging. You’ll hear new medical terms, undergo many diagnostic tests, and meet medical professionals you may not have needed in the past. Adapting to ongoing treatment may take time, but there are many ways to prepare. 

It is understandable to feel many emotions all at once. People facing a serious diagnosis often feel anger, loss, confusion, and fear. There is no “right” way to feel. Your emotions are a product of your situation, your personality, and your personal coping style. These feelings may change throughout your treatment as you confront new challenges. 

No one expects you to be strong, brave, or together all the time. No one expects you to handle this alone.

Some people find it helpful to share feelings with friends, family, or others living with metastatic breast cancer. Others may seek out support groups or individual counseling. 

Whatever your reactions, allow yourself to experience them. Know that resources are available to support you throughout your journey. A metastatic diagnosis comes with different worries at different times. No one expects you to be strong, brave, or together all the time. No one expects you to handle this alone. 

Managing a Metastatic Breast Cancer Diagnosis from the Start

Hearing you have breast cancer is difficult news, but your emotions may be intensified when you learn that it has metastasized, or spread to areas of the body outside the breast or nearby lymph nodes. Along with the shock of diagnosis, you are given a great deal of unfamiliar medical information. 

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It may help to write notes during all your appointments. Knowing as much as you can about your situation may empower you. When you have your first meeting with your doctors, you may want to take someone with you – a trusted, reliable friend or family member – who can take notes or record what you discuss. You may want a way to review the important information you’ll receive. 

In fact, you might want to keep a running list of all medicines you take, tests that you have, and symptoms and side effects you experience. Your personal notes may help you remember questions that you have for your doctors. If you prefer to record conversations with your doctor rather than take notes, let your provider know.

Your doctors might also recommend resources to you. Information about metastatic breast cancer can be found online as well. If you turn to online resources, be aware of how reading those resources makes you feel. If they cause more anxiety or stress, you may want to stop reading or ask someone you trust to do research for you. 

It is common to be overwhelmed by the amount of information available and the differences between sources. As you find resources that you trust, make a list for the future. Keeping a personal or online journal may provide an outlet for anxiety. It also makes a great record of concerns you may wish to discuss with your doctors and other support professionals. Your healthcare team can speak to your specific concerns.

Reprinted with permission from Living Beyond Breast Cancer’s Metastatic Breast Cancer Series: Guide for the Newly Diagnosed, 3rd Edition, ©2016. To learn more, visit LBBC.org or call (855) 807-6386.

This article was published in Coping® with Cancer magazine, September/October 2018.