Living with Advanced or Metastatic Breast Cancer

When you first learn you have advanced or metastatic breast cancer— or cancer that has spread to lymph nodes or other organs, including bone, brain and liver - many questions and emotions arise. How did this happen? How can I possibly cope? Can my family handle it? Am I going to die? Can I work - and how can I afford not to? What do I do now? You may feel fearful, shocked, angry, overwhelmed and out of control. Don't hesitate to seek out help and support from social workers, therapists, support groups (in person or online), family, friends and clergy.

In decades past, a diagnosis of metastatic breast cancer automatically came with a very poor prognosis and few treatment options. This picture has changed dramatically, with many therapies available to treat the disease and a shift in the mindset of how the disease is viewed by practitioners. These advances don’t change the fact that these women and men will live with breast cancer for the rest of their lives, but the many treatments now available have helped make the disease more of a chronic (long-term) condition for many, extending their lives and providing a better quality of life.

While this progress is good news in terms of treating cancer, it has left the many people living with advanced or metastatic disease in need of a different kind of support than those with early stage disease. It’s easy to find fellow survivors of early stage disease - not so easy to find others living with metastatic disease. Looking for a support group? Most cancer centers have one for women with breast cancer, but not all include those with advanced disease for fear of scaring the women with early stage disease. As a result, a person can feel particularly isolated when faced with this diagnosis - even though there are many thousands of women living with advanced breast cancer. This page is designed to help you find the resources and support you need.

Facing a New Diagnosis of Metastasis

If you have been through cancer treatment before, keep in mind that you know much more now than you did at the time of your original diagnosis. Use that knowledge to guide your treatment decisions and help you put into place the support you need to get through.

If you are newly diagnosed with breast cancer that is discovered to be metastatic, call on your best support people to help you research treatment options, weigh the pros and cons and make decisions. Bring your support person(s) to your appointments to take notes and help you recall what was discussed when you get home. OncoPilot logs can help you get organized.

Metastatic breast cancer means something different to each person that hears these words and what this means for prognosis is no different. Advances in therapies allow this to become a chronic illness for some, with people surviving for many years on and off therapy. For others, time may be much more limited. This does not mean you cannot aim for the best possible quality of life while going through breast cancer treatments and managing symptoms.

Hope can exist even when what was originally hoped for is not likely to happen. Focus on achievable daily goals, such as attending a child's soccer game or lunch with a friend. This may help you appreciate the "little" treats in life and keep you focused on the good things. Some like to set a long-term goal or milestone, such as seeing the birth of a grandchild. Save your energy to spend doing things you enjoy. Be realistic in your goals, accept that you won't always be up for the task and may need to adjust your goals for the day based on how you feel. Don't be afraid to ask for help when needed.

Metastatic cancer can be a devastating part of the journey. While it may seem that the cancer has "won," don't let it take everything. It may be hard at times to remember that you have a lot to live for, but don't let cancer keep you from moving forward, enjoying life and spending time with loved ones. Make the best of what you have and don't dwell on things that happened in the past or what may or may not happen in the future. Live each day as best you can and realize some days will be better than others.

Resources for dealing with a recurrence or metastatic cancer

• Guide for the Newly Diagnosed: Metastatic Breast Cancer
• NCI publication, When Cancer Returns
• ACS resource, Coping with Cancer Recurrence

Resources for Information on Metastatic Breast Cancer

Finding information about advanced or metastatic breast cancer can be an important step to coping with the disease and choosing the best treatment option. The following websites provide helpful information about advanced breast cancer.

• Living Beyond Breast Cancer
• Metastatic Breast Cancer Network
• Advanced Breast Cancer Community
• Sharsharet
• Breastcancer.org

Resources for support

The following groups provide support groups, online communities, discussion boards or buddy programs for women and men with metastatic breast cancer (mbc).

• SHARE: telephone helpline and support group (in person or by phone).
• Living Beyond Breast Cancer: survivor’s helpline puts you in touch with a woman who has been there.
• Metastatic Breast Cancer Network: list of resources from many organizations.
• CancerCare: offers a telephone support group for women with mbc.
• Sharsheret: supports Jewish women with counseling and support groups.
• Triple Negative Breast Cancer Foundation: Discussion board for people with metastatic or recurrent TNBC.
• Breastcancer.org: discussion board for metastatic disease.

Video Resources

The following videos may be helpful to you as you cope with a metastatic or advanced breast cancer diagnosis.

Shared with permission from lbbc.org, the website of Living Beyond Breast Cancer, ©2013. For more information about this video, please visit lbbc.org or call Living Beyond Breast Cancer at (888) 753-LBBC (5222).

Johns Hopkins hosts several retreats annually for breast cancer patients and survivors, giving them an opportunity to spend time with others who have been in their shoes. Their stories will no doubt resonate with you and may provide some sense of normalcy to the feelings you may be experiencing.