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You Have Metastatic Disease. Now What?

One of the most common questions women diagnosed with metastatic disease ask is: What did I do wrong?

The answer is this: Nothing.

Early detection through screening does not guarantee that you will not get metastatic disease. Surgery, radiation, chemotherapy, targeted therapy, hormone therapy: these treatments reduce your risk of having your cancer recur and they may have helped keep your cancer at bay for years, or even decades. But if you have metastatic disease, the likelihood is you just had the bad luck of getting a particularly aggressive type of breast cancer.

The good news is that new types of cancer therapies are helping women with metastatic breast cancer live much longer. And there are more new treatments in the pipeline.

The Science Behind Metastases

Cancer cells can get out of the breast tumor early on, even before the tumor can be detected on mammogram or by breast exam. They do this by moving through the blood and lymph systems. The cells that get out of the breast sometimes take up residence in other organs. If you received systemic therapies—chemotherapy, hormone therapy, or targeted therapy—after your initial cancer diagnosis, it was to kill these cells. If and when cancer comes back, it is those cancer cells that escaped the breast early on that are to blame.

If your recurrence is 10 years after your diagnosis, it’s likely that the cells that landed somewhere else in your body were dormant (sleeping) all this time. Then something changed and the cells woke up from their hibernation.  What changed? Did the local environment around the cells change? Did your body change in some way that stimulated the cells? If and when researchers figure out what causes these cells to wake up—and how to stop them from doing so—it will be a whole new chapter in breast cancer treatment.  Until then, the focus must be on how to treat the cells that have now woken up.

Emotional Repercussions

Being diagnosed with a recurrence can be devastating. The process of psychosocial adjustment starts all over again. You may now feel like you can’t trust your body. You may also begin to second-guess your doctors and treatment, thinking: Should I have gone somewhere else for treatment? Was it the fact that I was too stressed?  Should I have had a mastectomy or chemotherapy, exercised more, or drank that special tea my cousin told me about?

These are very common feelings, but it is important to remember that a recurrence is almost never your doctor's fault or your fault. It’s the result of factors that we do not understand and cannot control.

Many women who have had a recurrence report that getting support and assistance from friends and family, counselors, therapists, support groups, and even social media helped them learn how to manage living with metastatic disease.

There are many sites and advocacy groups focused on metastatic breast cancer that you might find helpful.

Learn more about metastatic breast cancer and its treatments in Recurrence.