Office Hours: Cancer Survivorship

The concept of survivorship in the context of cancer has changed a lot over the last few decades. Cancer is often thought of as an acute illness, in that when someone is diagnosed, they’re treated for it and then doctors assess for any remaining “evidence of cancer.” If there is no evidence of cancer, then that person is considered successfully treated. If five years pass with no evidence of cancer, then that person is considered a survivor.

But survivorship is actually a complicated and much more nuanced concept. There are individuals who might have metastatic cancer, for example, in which the cancer has spread from the initial site to other parts of the body. A person may live with metastatic cancer for weeks or months. In some cases, years. For those individuals, what does it mean to be a survivor? One term used in the metastatic breast cancer community is “metavivor.” What does quality of life look like for them?

Another group is individuals who are diagnosed with a chronic form of cancer. I’m currently studying people who have chronic lymphocytic leukemia (CLL), which often lasts indefinitely.

With CLL, a person may not need treatment right away. The periods between diagnosis, initial treatment and subsequent treatment is called “watch and wait.” They’re under observation with their doctors and then undergo treatment as needed. What does survivorship mean to
someone who will likely live with cancer for the rest of their life?

A persistent assumption is that CLL is the “good” kind of cancer. The treatment often doesn’t have as many side effects as other kinds of cancer. CLL is something people live with for a long time. But no one really wants to hear that they have the “good” kind of cancer. When people find out that they have cancer, they want a certain level of gravitas, not to hear from their oncologists, “Be happy; it can be so much worse.”

More sensitivity is needed in treating people with any form of cancer and recognizing that any cancer diagnosis is going to cause stress and worry for that individual and their family.

Decades of research supports the fact that how family members react to someone’s cancer diagnosis is often very much informed by what their previous experience has been with health issues, be it cancer or something else. If a family had a major health crisis five or 10 years ago that they didn’t cope very well with, that negative traumatic experience can be in the forefront of their minds when there’s a new diagnosis. Conversely, families that had sufficient support and coping mechanisms may understand that this new health issue will be challenging, but they have been through hard things before, they handled it well and they anticipate being able to overcome this new challenge.

There is also research that indicates that people who have less supportive intimate partners and spouses may have worse physical health outcomes compared to people who have more-supportive spouses or partners. My dissertation focused on women who were single when they were diagnosed with breast cancer. Half of the people had never been married. The other half were divorced at the time of their diagnosis. Many people who were divorced basically said, “The cancer diagnosis is unfortunate, but I am so glad that I was diagnosed after getting divorced because my life is so much better going through this single than if I was still with an unsupportive partner.” Not all partners are supportive—or are able to cope with the diagnosis and treatment—and therefore, it’s important that patients’ medical teams don’t assume the presence of a partner guarantees sufficient support for the patient.

In order to best support patients and families, it is crucial that medical care providers don’t make assumptions; ask about the needs, questions and fears of patients and families; and know when to refer people to mental health care providers. A diagnosis of cancer brings stress and fear. Ensuring people feel cared for goes a long way in improving their quality of life.