Cancer Survivors: a community of climbers

image released by ABC

Cancer is complicated.

There could be no more poignant example than Robin Roberts.  Her situation illustrates that being a survivor can be complicated too—confounding, confronting, and confusing.

Even starting with the word itself.   It can be confusing to know exactly what is meant by cancer “survivor.”  So for the first time in the 18 years  of my own “survival”, I looked up the definition on the American Cancer Society website.

 Survivor can have several different meanings when applied to people with cancer. Some people use the word to refer to anyone who has been diagnosed with cancer. For example, someone living with cancer may be considered a survivor. Some people use the term when referring to someone who has completed cancer treatment. And still others call a person a survivor if he or she has lived several years past a cancer diagnosis. The American Cancer Society believes that each individual has the right to define his or her own experience with cancer and considers a cancer survivor to be anyone who defines himself or herself this way, from the time of diagnosis throughout the balance of his or her life.

I love the idea of survivors defining ourselves.

Over the past few decades, being a cancer survivor has changed from something hidden or private—to a badge of honor.  Today the label signifies a warrior, a source of constant inspiration,  always brave and upbeat, walking to raise money or climbing a mountain.

Obviously all survivors aren’t climbing mountains.  And many of us don’t feel anything remotely close to upbeat. Or brave.

I just wanted to continue surviving.  And I feel fortunate that I survived pretty much intact— minus a few key body parts.  But there are many other effects that you can’t see.

Cancer invades not only your body but every other area of your life.  After treatment, although you may “survive”,  you may be  left with damages everywhere.  The heart and other organs.  The immune system.   Emotions.  Finances.     Intimacy.  Stress.  Fatigue.  There’s almost no place the tentacles of cancer don’t reach.

Today those tentacles have infiltrated into the health and lives of 12 million cancer survivors in the United States alone.    Over the past 40 years, our numbers have quadrupled——and are growing every day.

The sheer size of those numbers, the broad spectrum of ways cancer impacts lives;  and the high costs –financial and otherwise –pretty much demand that we pay attention as a society to the topic of cancer survivorship.

What are the issues and needs of cancer  survivors and what can be done to improve the quantity—and quality—of life after cancer?

Scientists are beginning to find those answers; and to devote attention to survivorship as a study in itself—another part of the cancer journey.

There is very exciting research in many disciplines that intersect with survivorship—and a very exciting event bringing them all together—as a  joint project of the National Cancer Institute’s Office of Cancer Survivorship, the American Cancer Society, LIVESTRONG, and the Centers for Disease Control and Prevention.

The Cancer Survivorship Research Conference  takes place this week  in Arlington, Virginia; with this year’s theme: Translating Science to Care. This meeting is a forum for researchers, clinicians, cancer survivors, advocates, program planners, policy-makers, and public health experts to learn about current and emerging cancer survivorship research.

The conference addresses topics that range from obesity to fatigue to aging to  resilience to relationships—-all geared to take what science learns in the lab—and apply it directly to the enormous community of survivors.

I’m on my way there now; and I feel especially lucky to attend, as a survivor and representative of the American Cancer Society Blogger Advisory Council.  And I will be sharing what I learn online to help survivors live longer and stronger.

One thing I’ve already learned in years of connecting and communicating with the community of cancer survivors— though they may not be in the Himalayas, they are climbing mountains every day—and every survivor I’ve ever met is inspiring.

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  1. Lupi Robinson says

    Sadly, surviving 5 years past a diagnosis of breast cancer does not mean that you have “beaten” cancer, however heroic your struggle may have been. We do not do women favors by encouraging them to do the “cancer happy dance” prematurely. Nor do we do women favors (as you suggest, Darryle) by insisting that all those who have been diagnosed with breast cancer should style themselves as “warriors in pink” and develop a “positive attitude” as if that were armor against recurrence.

    Regarding Robin Roberts, I am reminded of Brandon Tartikoff, who survived Hodgkins but died many years later from a leukemia caused by his treatment. Women with breast cancer also die as a result of adriamycin-associated heart complications.

  2. says

    Huge apologies for neglecting to respond to your comment–and I could not agree with you more. I felt a particular sadness about Robin Roberts because my ex-husband died earlier this year of MDS, which he also got from having chemotherapy; and I’m sadly very familiar with that disease.
    As for saying you’ve beaten breast cancer, as you say there is no such thing. Knowing people who recurred as much as 15 years later, I still don’t feel safe after all this time; and as for all the pink, like many survivors I’m pretty pinked out. Don’t even get me started on the “positive attitude.” I learned a great phrase at the survivorship conference that says it all–“the tyranny of the positive.” Thanks so much for commenting and I solemnly promise not to take so long next time!

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