The Rules

The dos and don'ts when someone you know is diagnosed.

BY LESLIE STARSONECK
PUBLISHED: JUNE 01, 2010
People want to know the rules about what to do or say when a friend or family member is diagnosed with cancer. Here are my experiences and suggestions.

> “My aunt had cancer”: When I was first diagnosed and sharing the news with friends and family, I didn’t want to hear about other people who had cancer. It made me feel like I needed to be empathetic to that person—who was usually a stranger—or sympathetic to the person telling me, at a time when I had trouble mustering much energy beyond saying what was happening to me. I also quickly learned that these disclosures rarely had any value to me medically because of how very different each person is in terms of the stage, biology, and treatment for the disease.

> Ask: Ask whether the person facing cancer is comfortable sharing the details of their prognosis and treatment. If the patient tells you, it may give you an idea of how you can help. On the other hand, if you ask and get only vague details, you should accept this as a request for privacy and not ask others to provide this information.

> Respond: Even if you’re at a loss for words, say something when a person tells you about his or her diagnosis. Say that you’re at a loss for words or don’t know what to say, but don’t remain silent or ignore the elephant in the room by talking about everything else. This says to the patient, “You shouldn’t have told me this because I can’t handle it.”

> Help: Ask the patient if they want your help, and be specific about how you can help. This goes for little things, such as doing the laundry, and big things, such as publicly honoring them at a race or fundraiser.

> Don’t forget the caregiver: Whether it’s helping with some of the caregiver’s responsibilities (for example, running errands), delivering leisure items for them to use during “downtime,” or getting them out of the house, make sure to ask permission to help in specific ways. Then make sure to follow through.

> It’s OK to say or do the wrong thing: Remember that what you do or say to the patient doesn’t have to be perfect. The most important thing is that it’s genuine and based on care and concern. It’s so much better to say or do the wrong thing than to not say or do anything at all.

> It doesn’t end with recovery from surgery: Having the many phases of the journey acknowledged by others was important for me—fear of recurrence, the inevitable adjustments to medication, or the new way my body looks and feels—as opposed to treating cancer as a series of discrete events.

> Keep in touch: Show the patient that you recognize that cancer—whatever its particular path—is a journey. 

> Set realistic expectations: This rule is for patients who, like me, may have learned that family and friends don’t suddenly change their personalities because you have cancer. There may be instances where people step up who you thought wouldn’t, or people you thought you could rely on who you can’t. But for the most part, how someone responds will be in keeping with how he or she has always been. 

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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