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Being in treatment for life

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You probably have heard people talk about breast cancer as a disease that can be treated and then ends. If you’ve had breast cancer before, maybe you felt your experience was over when treatment ended. Perhaps you felt you “beat” cancer and could move on. If this is the first time you’ve had breast cancer, you may never have thought about it as a disease that you might live with for life.

There are many women who go through breast cancer treatment and never have to deal with it again. But for between 20 and 30 percent of people the breast cancer returns to a distant area of the body, perhaps in a short time but sometimes many years later. About 6 percent of people start out with stage IV disease at first diagnosis, sometimes called de novo metastatic breast cancer.

A diagnosis of metastatic breast cancer is different because it means you will actively deal with breast cancer for the rest of your life. Unlike with earlier-stage breast cancer treatment, the goal of treatment for metastatic disease is not to cure the cancer. The goal instead is to control the cancer for as long as possible while allowing you to experience a high quality of life. It’s possible to live a long time with metastatic disease.

Long-term treatment

Throughout the course of your metastatic disease, your doctor will put together treatments designed to shrink or weaken the cancer and prevent it from spreading while also managing your symptoms and side effects from the medicines. Surgery and radiation therapy, very common for early-stage disease, are used less often for metastatic disease and usually to relieve symptoms under certain circumstances.

Your treatment plan will likely change if the cancer grows or spreads. Your doctors will talk regularly about progression, the growth of tumors or spread of cancer, and regression, a decrease in tumor size or the cancer’s reach.

While metastatic breast cancer is not considered curable, it is possible to experience periods where the cancer does not grow and is considered stable. Tests may even show no evidence of disease, sometimes referred to as NED. When one treatment stops working, you and your doctors will look at new options.

While the main concern is getting rid of tumors and outlying cancer cells, you and your doctors may also want to think about what you are willing to try and what you aren’t, so that you continue living the way you want to live. Maintaining your usual activities and participating in the things that give you pleasure are essential to your overall well-being.

 

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Reviewed and updated: August 19, 2019

Reviewed by: Pallav K. Mehta MD

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Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical, and evidence-based content. For over 30 years, the organization has remained committed to creating a culture of acceptance — where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, learn more about our programs and services.

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