I'm a Survivor Too: Dealing with Cancer as a Family

March 4, 2010

Here is a truth: a single cancer diagnosis strongly affects more lives than can be counted on two hands (maybe even four or five hands). This is one of the first lessons I learned about cancer survivorship. Back when I was running across the U.S. to benefit cancer survivors, I had a debate with my public relations staff. During a media interview, I described what I understood to be the experience of a cancer diagnosis (having never had one myself) as a “bomb followed by a mushroom cloud.” The public relations team thought that description was way too negative. I agreed the connotation might have been harsh, but I thought it accurately described what I was seeing as I met survivors all across the country. I met so many survivors who invariably told me how the disease and the treatment had affected them (the diagnosed) AND their family and friends. It was impossible for survivors at any stage to tell me their stories without including the experiences of their families and friends.

Just a few days ago, I was speaking to a close friend who just received news of recurrence. My friend was telling me about how he is “ok” but he worries about his significant other – in not so many words, my friend was saying he thinks it might be harder to be the one watching than to be the one going through it. I don’t know about that, but I do know that the experience is likely very different. The emotions are different and the tools used to cope effectively are likely very different!

The journal, Psycho-Oncology, published a new study online yesterday titled – We are survivors too: African-American youths’ experiences of coping with parental breast cancer. In this study, African-American adolescent children of parents diagnosed with breast cancer described feelings of fear and uncertainty regarding their parents’ lives, and “discomfort negotiating breast cancer’s relationship with their families.” The authors concluded that adolescents in general need more developmentally-appropriate preparation and support for the changes the family will likely endure as a result of the parent’s cancer diagnosis. The piece of the study that jumped out at me was that some of the African-American youths described being “overlooked” by physicians treating their parents, and they felt “out of the loop.” Of all the problems associated with cancer, this is certainly one of the fixable problems. Doctors should take special care to inform the whole family, and parents should be sure to let their kids ask questions and feel informed. Doctors, in fact, can refer families to mental health and social work professionals trained to help families effectively cope and exchange important information.

Why did the researchers study African-American adolescents? There are a couple of reasons. First, there are known racial disparities in the incidence and mortality of many cancers, and breast cancer is the most common type of cancer among African-American women. So the researchers investigated a population hit hard by breast cancer. Second, the literature suggests that mental and emotional development often differs by race (not better or worse – just different), and so the mechanisms by which an adolescent of one race might cope with a parent’s cancer will likely differ from the mechanisms employed by an adolescent of another race.

This could be an uncomfortable topic to discuss, and you could imagine how it might be difficult even between a doctor and a patient. But it is my hope that if you are reading this, you are thinking maybe it might be a good time to consult a professional. While oncologists are trained to attack the issues presented by cancer in the body, mental health and social work professionals are trained to attack the interpersonal issues presented by life changing events – like a cancer diagnosis. It is clear to me that sweeping it under a rug, regardless of age, race, background, or family circumstance is not the appropriate method.

A final thought: I have heard debates about the term “survivor” – some feel that the term should only describe persons who have received a diagnosis; others feel that the term should extend to describe anyone affected by a cancer diagnosis. I don’t know the answer to this question, but I certainly agree that cancer affects more than just the diagnosed person, and it seems to me that I have heard more often than I can count – “WE survived cancer.”

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