Breast cancer recurrence

Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology Social Work

FEBRUARY 25, 2019

This is the topic that we usually try to avoid.  As much as we may try to avoid it, the anxiety persists, and all of us know that the possibility lurks. All of us who have been treated with the hope of cure, never having to deal with breast cancer again, worry about the possibility of a recurrence. Since I am not a doctor, this will be the non-medical version of the facts you should know. One truth about Cancer World is that patients are very rarely told that they have been cured. There are a few cancers, leukemia and some lymphomas as examples, that are very unlikely to return after five years. If you make it that far, you are almost certainly going to stay well.

The common belief about the five year mark being a safety point for most cancers is, sadly, just not so. That is a big reason why our doctors are not going to tell us we have been cured of breast cancer even after five or more years have passed. The best we can hope to hear is something along the lines of: Everything looks great. Or You are doing well. Or There is no evidence of the cancer (also called NED=no evidence of disease). Hoping to hear something more definitive or more of a promise is a losing proposition.

  As a gross generalization, more aggressive cancers tend to recur more quickly. If enough safe time passes, you can start to feel a little less worried. For example, women who have been treated for triple negative breast cancers and who are well five or six years later are probably fine. But they, too, are not going to be given a guarantee.

 For plenty of other cancers, including most ER positive breast cancers, recurrence can happen much later. Since women with ER positive breast cancers are routinely treated for years with anti-estrogen/hormonal therapies (tamoxifen and the AIs), there are too often late recurrences. This is the reason why many of us are staying on those drugs for far longer than the original five year plan. I see women weekly who are 10 or 15 years past breast cancer and now dealing with a new recurrence. I realize I need to pause here and be reassuring: Most women who are well for this long will stay well. But there are exceptions, and it is not crazy to maintain some level of concern.

  In the early months, the thought of cancer is always present. It is our last thought at night and our first thought in the morning. That slowly changes, and eventually whole days, whole weeks, pass without the anxiety. For most of us, however, it does not take much to again fall down the rabbit hole of fear. A symptom that persists should still be acknowledged. A danger can be the assumption that enough time has passed that it can't possibly be cancer. I have known a few women who had back pain years after breast cancer and it never occurred to them that cancer could be the culprit. In this case, ignorance is not bliss, and they went for months to a chiropractor or other clinician who also never considered cancer--and the pain got worse, and the cancer was not identified and treated until things had progressed further. Once we have breast cancer in our medical history, it must always be part of the differential diagnosis if there is a new problem. Most of the time, the diagnosis will be something benign, but we do have to remember the unfortunate possibility. It remains important to be vigilant and care for ourselves and follow up appropriately if we are worried about something.

In the uncommon situation that a breast cancer returns years after the original diagnosis and care, there are likely to be lots of treatments that will be helpful. New drugs are being discovered and evaluated all the time, and there are options that did not exist even a year or two ago. It can also be slightly comforting to remember that a breast cancer that comes back after 15 years is obviously not a wild fire, out of control, kind of cancer. No one knows what changes in our bodies to stimulate a few sleeping breast cancer cells to awaken and become active, but there are many therapies that will, hopefully, effectively slow down any cancer progression for years.

Even a very late recurrence does mean that cancer has re-entered our lives and will not be a permanent companion. Unlike the first time when the goal of breast cancer treatment was to make it disappear forever, a woman with metastatic disease is living with the reality of forever treatment. The strategy is to stick with a particular drug for as long as it is useful (and this can be years), and then move along to something else. These transition points are always difficult, but most women find ways to settle. Life can and does go on.

 How much do you worry about a possible recurrence?  share your story