What the Future Holds for Survivors
Hester Hill Schnipper, author of the newly revised After Breast Cancer: A Common-Sense Guide to Life After Treatment (Bantam), is an oncology social worker who counsels women with cancer. She was diagnosed with breast cancer 12 years ago. Then, unexpectedly, her doctor called with bad news: She had cancer again. Here, she answers our questions about how it feels to get a second diagnosis and what the future holds for survivors.
The Facts of Cancer Recurrence
Q. Aren’t more women living past the five-year mark? Isn’t that when a woman is told she’s cured?A. Yes, there are more survivors living past five years. But the word cured should never be used with a breast cancer survivor. Anyone who works in oncology doesn’t use it, and women who are diagnosed learn not to use it. There is still the belief that after five years, cure is a reasonable word to use with breast cancer. But with breast cancer, the most you can hope for is another year of NED — no evidence of disease.
There’s a sick joke in oncology circles that the way you know somebody was cured of breast cancer is when she drops dead many years later of something else. The challenge is to learn to live with uncertainty, and to live as if it’s not going to come back.
Q. What’s the likelihood that a woman who has already survived one bout with breast cancer will develop it again?A. Those who have already had one breast cancer have slightly more than a one percent chance annually of developing a second primary breast cancer. That risk doesn’t ever decline. Each year it’s one percent. If you had breast cancer once, clearly your body has demonstrated that it knows how to make a cancer. It makes sense that you would be at a higher risk than someone who has never had cancer, and that your body might choose to do it again.
Q. Is a recurrence a new cancer or a regrowth of the original disease?A. It’s a regrowth, but it’s also true that a woman can develop a new cancer. There are two general kinds of recurrences: a local recurrence, which means, for a woman who has not had a mastectomy and still has breast tissue, a few cancer cells were left behind after surgery or radiation. The new tumor is often in the same area of the breast that the first was, but not always. It’s still potentially treatable with surgery. It is also possible to develop an entirely new cancer in the same breast as your original cancer. That’s called a second primary breast cancer.
The other general kind of recurrence is a distant recurrence; it’s also called metastatic disease, because it recurs outside the original affected breast. (A local recurrence doesn’t count as metastatic disease.) Metastatic cancer means that the original cancer shows up in some other part of the body. So if you have breast cancer cells that show up in your lung, it’s not lung cancer, it’s breast cancer in your lung. And it’s treated with drugs that are used to treat breast cancer. Breast cancer that has spread or metastasized is defined as either lethal or terminal — whichever word is least scary. Although the hope is that you are going to be able to live for many years on treatment, you will be on some kind of treatment for the rest of your life.
Q. You faced the disease again after 12 cancer-free years. Is your situation typical?A. There are two truths about breast cancer recurrence. The first truth is that the longer you stay well, the more likely it is that you will stay well. Sixty percent of all recurrences happen in the first three years following diagnosis. But the remaining 40 percent can happen any time. The second truth is that it can come back at any time. Women who are estrogen receptor positive take Tamoxifen or an aromatase inhibitor, or both, as I did, for maybe a decade. And there is a feeling among experts that there may be more late recurrences than there have been in the past because those newer treatments keep any remaining cancer cells in check and create a longer disease-free interval. This is speculative, because studies haven’t concluded anything yet.