Survivorship--An Interesting Label

Many of my friends don't like to be called a "Cancer Survivor." They describe a variety of reasons for this objection.

For some there is the fear that using the term "survivor" tempts fate. How do you know that have you survived? Cancer can return. Are you ever safe?

Others say that they have friends who worked hard to rid themselves of cancer, but they died anyway. They feel like they are disloyal to those loved ones by calling themselves survivors when really, they just feel lucky.

Some think the term "survivor" is overused to the point where it no longer has meaning. In years past you needed to be years away from diagnosis and treatment in order to be labeled a survivor. Now you receive the label as soon as you are diagnosed. What does the term "survivor" mean in that context they ask.

Friends say that they are confused with the current trend of calling family members and friends "cancer survivors. They don't argue that these people should be acknowledged for all that they do and go through--but where do you draw the line?

Where did all of this start? I did a little research and found out that Dr. Fitzhugh Mullan is credited with being the first person to coin the term "cancer survivor." The source of my information is the transcript for Neal Conan's Talk of the Nation NPR broadcast on June 9. 2004.

The transcript of the program is available for purchase so I can't give you a link to it, but I can tell you about the show. You can find this transcript in the National Public Radio Archives.

Neal Conan started the program by saying, "According to the latest estimates, there are 10 million Americans alive today who've had cancer which raises a host of issues about after care and screening and depression and health care and stigma, many of which are symbolized by the controversy over what we call people who live with this set of diseases. For many, 'cancer survivor' implies that they've been cured or that they've won a heroic struggle, and neither may be accurate."

Dr. Mullan talked about his relationship to cancer and how it lead him to use and embrace the term "survivor." In 1975 when he was 32 years old he discovered that he had a "major cancer" in his chest. He had surgery, radiation and chemotherapy. Mullan was sick, fearful of dying and desperate to know that he would be cured. What he came to understand was "..for most everybody with cancer, the binary notion of either death or cure ...isn't the reality. The reality is kind of a DMZ, a kind of purgatory in which, for a long time, it may not be clear exactly the outcome with lots of complicating issues that nobody really focused on."

He started to think of this period of time as the seasons of survival. He wrote an article published in the New England Journal of Medicine 1985 that developed this concept and coined the term "cancer survivor."

Mullan explained that if you get past the acute period where you are being treated for the disease, you will enter a longer period where the outcome of your disease is uncertain. You deal with medical complications, social, vocational and financial issues. If you get through that you continue on to what he calls the period of permanent survival--meaning that whatever problems you have will stay with you for the rest of your life.

You get to keep the good things that occur during this process too-- like learning how tough you can be. And that is what being a survivor is--dealing with this entire range of experiences.

Dr. Mullan says that while it may not be a perfect term, so far he hasn't found anything better.

No one else has either--or so it seems. Perhaps it is the correct word. Perhaps there isn't a word that really fits.

Dawn was the last person to call into Talk of the Nation that day. She said, "...I'm wondering why we need a term, why can't we just say We're people who were diagnosed and are living with cancer?"

That's a solid thought, but it sure doesn't fit on a tee shirt.

So what are your reactions and opinions on this term? Do you have any suggestions?