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Stories from Adult and Child Survivors


Source: Fall 2005 CCCF Newsletter

At least once a month someone new signs onto the childhood cancer long-term survivors’ discussion listserv and in their brief introductory letter they usually write something about chronic pain or discomfort. One of the interesting things is they don’t call it pain and they frequently don’t associate it to prior treatment. There are many euphemisms applied to this state, things like “I have a delicate stomach, or a weak neck, or my body is lopsided.” The euphemisms describe the state but not necessarily the visceral experience. After many years of adjusting to discomfort and chronic pain, many survivors of childhood or adolescent cancer no longer recognize their experience as pain, although this often limits their pleasure and enjoyment of life.

These pain states may have developed during treatment or not long after treatment was finished, or even many years later. But as everyone was most concerned with eliminating the cancer, things like pain were and are frequently discounted, and if the pain develops long after treatment has finished, many survivors and physicians do not have the skills or knowledge necessary to associate the pain with past cancer treatment(s). More than one survivor who has tried to describe their pain state has been met with the response “but your cancer was cured, you should be so grateful.” Or the survivor feels they are complaining unnecessarily about a treatment that saved his or her life. All of this contributes to a situation where physician and survivor live in a state of denial about chronic pain in survivors, and survivors are often under-treated for chronic pain.

Margie is a typical example. She was treated for Hodgkin’s Disease in her late teens back in the 1970’s. Her treatment, state of the art at the time, included high dose radiation to an area described as the Mantle, which includes a field that extends from the base of the skull down to the top of the diaphragm. Margie, like lots of other HD survivors treated with this protocol, has a very thin neck. When she first signed onto the list she described the embarrassment she felt about her weak neck, too weak to lift from a hair salon shampoo basin unassisted. Margie can’t sit for long in a typical dining room chair because in order to be comfortable she needs a back rest that holds her upper back and neck. At home she finds she is most comfortable in her lounge chair with a heating pad draped over the back, but this does not take care of all the pain she has. And although Margie makes great adjustments and accommodations for her neck and upper back, she never thought to call this chronic pain or to seek help for it.

When Margie assessed her life, she realized that chronic pain was shaping what she did and how she did it. She was reluctant to accept dinner invitations because of the pain associated with sitting in a straight backed chair; she realized her life was more and more about accommodating pain than living and enjoying. The search for help was long and difficult, as it is for many survivors. Her first questions about the state of her neck and back were met with flat denials. And finally when she did find a physician who admitted there was muscle atrophy, this physician did not refer Margie to a pain specialist. It was only after the help and support of other survivors that Margie finally made contact with a pain specialist who began to work with her.

Margie’s case is not unusual. The long term survivor of child and adolescent cancer faces many types of pain related to prior treatment. Although most of those with chronic pain were treated with radiation, there are other survivors who have neuropathies (nerve pain) associated most frequently with chemotherapy agents like Vincristine. Although the nerve pain associated with Vincristine usually disappears over time there are some survivors who don’t return to baseline and even a few who many years after treatment once again find themselves with neuropathies associated with prior treatment. These burning, tingling, even throbbing sensations can range from mildly irritating to incapacitating. Mark is a long term survivor who had Vincristine as part of his protocol. At the time of treatment he was 15 and during treatment he knew that some of the problems he had, like foot drop, were caused by his chemotherapy drugs. Yet, when he developed burning throbbing pains in his feet at age 35, he did not associate this new problem with prior treatment. Again, like many survivors his attitude initially was one of stoicism – this was something to be borne rather than diagnosed and treated. Only when his problem threatened his livelihood, as he found it harder and harder to sit at his desk to work, did he seek help and, like Margie, found that seeking help was a long and roundabout and frequently frustrating experience. Eventually Mark found someone who recognized his foot problem for what it was and, with a combination of medications, he has found relief.

There are many more stories like Mark and Margie that elaborate and illustrate the many points Dr. Zeltzer makes in this essay. Chronic pain does exist in long term survivors of childhood cancer. There are many causes of this pain and all treatment protocols for childhood cancer potentially can produce pain either during treatment or many years later. Chronic pain is under recognized by both survivors and physician and under treated. Survivors don’t have to “bear their pain” and Dr. Zeltzer’s article here and her book offer many helpful ideas about intervention and treatment, comprehensively assessing and treating the pain of long term survivors. Survivors don’t have to accept chronic pain as the price of survival. As Dr.Zeltzer so compassionately illustrates, there are ways to intervene and help.

by Linda Goettina (Zame)