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Childhood cancer survivors -- why we wrote it

May 23, 2008 |  4:45 pm

Patti500

Facing a possibly fatal condition at any age can be life-changing. But what about people who come of age during this struggle? Does the experience perhaps become life-defining?

Children who survived cancer would know, and it's to them we turned for answers. As the Times article points out, the nation's physicians, nurses and technicians have become considerably more proficient at treating young patients with cancer. Before 1970, most children diagnosed with the disease were also killed by it.  Today, nearly 80% are cured.

But that cure comes at a price.

People who have been so dramatically changed by disease -- and the attempts to cure it --  have much to teach us all. We've benefited from the medical lessons of their treatment; now perhaps we can benefit from the emotional lessons as well.

As reporter Susan Brink writes upon learning in the early 1990s that a high percentage of young survivors was developing second cancers, closely related to their initial cures: "I cringed at the unfairness of a child struggling through harsh treatments, only to face an increased risk of having to go through it again as an adult."

She began interviewing survivors of childhood cancer and the physicians who cared for them to see how young adults who had survived cancer were coping and what the medical community was learning from them.

"The young adults I talked with have learned tough lessons early about the fragility of life, lessons that most of us don't have to learn until much later. A lot of years pass between pediatric cancer treatment and the adult onset of late effects of treatment," she says. "So cancer survivors can have a tough time sorting it out -- because science hasn't sorted it all out -- which of their health problems would have come their way anyway and which are directly related to cancer treatment."

She concludes: "Their stories are a stark reminder that medicine can save lives, but seldom without changing them, sometimes in profound and unforeseen ways."

-- Tami Dennis

Photo: Annie Wells / Los Angeles Times

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Comments (6)

Thank you so much for this story. As a survivor of childhood cancer everybody is always so happy that you survived cancer but often don't realize that the struggle to stay alive doesn't end with beating cancer. Due to my cancer treatment I have developed pre-mature coronary artery disease, bone disease which has limited my mobility, cataracts, infertility and lung disease. Emotionally you also have to grow up a lot faster than your peers and face your mortality in a way that others your age don't even think about. Although this experience has been tough, it has made me more focused and appreciative of everything and everybody around me.

Thankyou for writing this article. Survivors of cancer at any stage of life suffer physical side effects from surgery, radiation, and/or chemotherapy, as well as psychologically disturbing memories of: diagnosis, searching for correct treatment, anticipation of treatment, treatment, and recovery periods; which are all associated with their own particular obstacles.

Finally, survivors may face the guilt of knowing that each day and night other people are lying in hospitals experiencing the same feelings of desolation they once did, undergoing the same traumatic treatments that may not save their lives, and there's nothing they can do to help them.

The last feeling of guilt/shame/hopelessness can never be shaken.

Matt,
-Survivor of a large brain tumor surgically-removed over two surgeries seven years and four years ago.


It's always good to see a story on childhood cancer survivors, but why are the three survivors profiled all people who were diagnosed as teenagers with adult cancers? It would be nice to see profiles of people diagnosed as children (not near-adults) who survived childhood (not adult) cancers.

I was diagnosed with ALL on Oct 18 1980 at age seven, I relapsed in Oct 1982, I was treated for TC in Mary 1991 and since then I've had a stroke and a non-cancerous tumor in my neck. Thank you for this article.

Thank you for pointing out that the standard protocol for treating cancer-radiation and chemotherapy-are themselves carcinogenic. Whenever I hear that someone has succumbed to cancer after receiving radiation and chemotherapy, I wonder how much these agents contributed to the patient's demise. We should be vigorously pursuing less draconian measures to fight cancer.

I was one of only nine children who survived rhabdomyosarcoma between 1967 and 1972. We pioneered the treatment that is in use today. Yes I have many issues from my treatment and I'm surprised that it has taken this long for people to start talking about collateral damage. In my time, survival was such a miracle that the issue of permanent damage was dwarfed by the survival. Now, nobody wants to talk about it because it's unpleasant. I recently heard someone use the term, "New Normal". This makes me mad because it's another way to sugar coat the facts of survival. I'm proud of my survivorship but what those of us did in the beginning is dishonored when our permanent issues are not acknowledged. We suffered severe damage just like everyone else does, but sweeping it under the rug doesn't help us to fix it or address the needs of those who must live with it. In other words, honor your survivors by acknowledging their continued struggle with cancer, The struggle to handle the collateral damage from a fight for their life.



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