If Cancer Comes Back

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If you have symptoms or tests that suggest the cancer has returned, you probably feel scared about the future. It's important to get help coping with your fear of recurrence, and not try to "brave your way through it" alone. You also probably have many questions that are very hard to ask: "How could this happen, after I worked so hard to do everything right? I followed every doctor's recommendation. I ate all the right foods and exercised regularly, even when I wanted to skip it."

It IS hard to make sense of this. This is particularly true if your original cancer was only in the breast, your chest X-ray, blood tests, and bone scan were all normal, and your surgeon assured you, "I got it all." The return of breast cancer can be especially shocking if you have passed the 5-years-since-diagnosis mark.

This is where the limits of tests for cancer become apparent. Tests can detect a growth of one half to one centimeter or more. But they are not sensitive enough to detect a collection of single cancer cells. Cancer cells that somehow escaped destruction the first time can grow and spread. Eventually, the tumor is big enough to see on an X-ray, feel with your hand, or cause symptoms.

Twenty to thirty percent of all women first diagnosed with cancer limited to the breast eventually develop it elsewhere. In 30% to 60% of women with cancer in their lymph nodes when first diagnosed, breast cancer eventually spreads to other parts of the body. The risk of cancer spread depends largely on the tumor size and the number of positive lymph nodes.

A lot of anger comes with this crisis: anger at the treatments you had and your doctors for their inability to cure you, anger at yourself for not beating the disease, anger at your body for betraying you yet again.

"Maybe I should have had the mastectomy." "Why did I stop tamoxifen?" "How could I have waited so long when I felt that lump?" All this second-guessing gets you nowhere. But it's not easy to let it go. You're trying to make sense of something that makes no sense, pin blame where there is none.

The best thing to do is to remind yourself that recurrence is not a death sentence. No matter what your circumstances are, something can always be done to help you. Breast cancer that returns to just the breast or nearby lymph nodes may be treated effectively with an excellent outcome. Disease that has spread to other parts of the body may be put in long-term remission.

Also keep in mind that you won't have the same experience with recurrent or metastatic breast cancer as women you know who had it years ago. New treatments for recurring cancer have improved survival. One large recent study showed that over the past few decades, women diagnosed with breast cancer have had significantly improved survival. And new treatments that have been widely used only in the past few years might mean even longer survival in the years to come.

The likely course of the disease depends on:

  • where and how extensively the breast cancer has returned
  • the "personality" of the cancer that has come back
  • how long it's been since you were last treated for breast cancer
  • which cancer treatments you've already had
  • any other medical problems you have
  • your general health

All of these facts need to be reviewed carefully. Only then can you and your doctors work out a plan of action.

Expert Quote

"Often, with all cancers, I see people who do really well emotionally while going through treatment. They go into a phase of, 'I gotta do what I gotta do.' Then when it's all over, they relax. They start feeling things that they didn't allow themselves to feel before. And there's the fear—that they are not doing anything any more! And they feel more vulnerable than while they were in treatment. Which is why in my groups, we talk about 'BC' and 'AC'—Before Cancer, and After Cancer. You can never go back to Before Cancer. You wonder: Will the cancer come back? The fear does lessen over time. But it's never gone completely."

--Shari Baron, M.S.N., R.N.

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