Recurrence of Cancer
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
SEPTEMBER 15, 2023
Cancer recurrence is a topic that we usually try to avoid. As much as we may try to not think about it, the anxiety persists, as we know that the possibility lurks.
With few exceptions, recurrent or metastatic cancer is not curable. It is certainly treatable and many people live a long time, but cancer and cancer treatment are a constant and chronic part of life. One truth about Cancer World is that patients are very rarely told that they have been cured. There are a few cancers (for example, leukemia and some lymphomas) that are very unlikely to return after five years. Some others that are generally very aggressive are also less likely to recur as more time passes. Even so, most doctors are unlikely to make a strong statement about a cure.
The common belief about the five-year mark being a safety point for most cancers is, sadly, not a guarantee. That is a big reason why our doctors are not going to tell us we have been cured of 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, or No Evidence of Disease).
Hoping to hear something more definitive or more of a promise is a losing proposition. A positive perspective might be that cancer treatments have improved over the years, and many people are staying well for much longer.
For some cancers, including most estrogen (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 aromatase inhibitors, or AIs), there are too often late recurrences. This is the reason why many of us are staying on those drugs for far longer than first anticipated.
In the early months, cancer is omni-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 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 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 cancer returns years after the original diagnosis and care, there are likely to be more 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 cancer that comes back after many years is obviously not a wild fire, or out of control kind of cancer. No one knows what changes in our bodies to stimulate a few sleeping 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 be a permanent companion. Unlike the first time when the goal of cancer treatment was to make it disappear forever, a person 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 people find ways to settle. Life can and does go on.