Living with Advanced or Metastatic Breast Cancer

When you first find out you have advanced or metastatic breast cancer (cancer that has spread to lymph nodes or other organs, including bone, brain and liver) it can be scary and overwhelming. You might have a lot of questions and feelings like,

• How did this happen?
• How can I possibly cope?
• Can my family handle it?
• Am I going to die? Should I go on hospice?
• What is palliative care and could it help me?
• Can I work - and how can I afford not to?
• How do I tell my partner? My children? My friends?
• What do I do now?

It is normal to feel scared, shocked, angry, overwhelmed and out of control. Don't be afraid to ask for help and support from social workers, therapists, support groups (in person or online), family, friends or religious leaders.

In the past, when someone was diagnosed with metastatic breast cancer, it was often thought that the person had little hope and very few treatment options. But now, thanks to new treatments, things have changed. Metastatic breast cancer still can’t be cured. But, some treatments can help people live longer and have a better quality of life. For many, metastatic breast cancer can be more of a chronic or long-term illness.

Even with these new treatment options, people with metastatic breast cancer need different kinds of support than people with early-stage cancer. It may be harder to connect with others who are living with metastatic breast cancer. Most cancer centers have support groups for people with breast cancer, but not all of them include people with advanced disease. This can leave people with metastatic breast cancer feeling isolated and alone. However, as more people are living longer with metastatic breast cancer, more supports are becoming available.

If you have been through cancer treatment before, remember that you already know a lot about how to handle it.  Use that knowledge to help make treatment decisions and ask for help.

If you are newly diagnosed with breast cancer that is found to be metastatic, ask your support system to help you research treatment options and make treatment decisions. It can help bring someone to your appointments to take notes and help you recall what was discussed.

 Metastatic cancer can be devastating, but it doesn’t mean you have to give up on life. It may be hard to stay hopeful. Try to stay in the moment and enjoy the here and now. It may seem that the cancer has "won," don't let it win everything.  Take life one day at a time. Some days will be harder than others. Live your best life. Small joys can make a big difference in coping and living with metastatic breast cancer.

Resources for More Information

Finding information about advanced or metastatic breast cancer can help you cope with the disease and choose the best treatment option. The  websites listed below provide helpful information about advanced breast cancer.

• Living Beyond Breast Cancer: Metastatic breast cancer
• NCI publication, When Cancer Returns
• ACS resource, Coping with Cancer Recurrence
• Metastatic Breast Cancer Alliance
• Advanced Breast Cancer Alliance
• 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).
• CancerCare: offers a telephone support group for people with mbc.
• Sharsheret: supports Jewish people 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.