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Clinical Care Doesn't End Post-treatment

Clinical Care Doesn't End Post-treatment

ABSTRACT: From the Volunteer Files of the Medical Care and Childhood Cancer Ombudsman Programs (MCOP/CCOP)

This case study illustrates some of the off-treatment issues your patients may face and provides some practical solutions to help patients overcome them whether you see them for regular follow-up or just receive an occasional phone call requesting assistance.

Catherine is a 44-year-old survivor of acute lymphocytic leukemia (ALL) who was initially treated in her mid-20s. As a result of her treatment, she was saddled with chronic fatigue. Despite her condition, she managed to work as an accountant for a local bank up to 20 hours a week with a few naps here and there.

On a personal note, Catherine is the youngest of seven children and still lives with her parents who have been and continue to be overly protective of her. While undergoing treatment, her parents repeatedly encouraged her to visit an alternative practitioner for "special injections" to stimulate her immune system, unbeknownst to her treating oncologist.

As a result of these visits, Catherine developed a severe injection site infection. After a heart-to-heart talk with her oncologist, Catherine opted out of these supplemental treatments, instead taking her oncologist's recommendation and focusing all her energy on completing the standard treatment regimen.

Post-treatment Catherine did not have access to a follow-up clinic. Luckily she found an internal medicine physician with some background in cancer survivorship issues to serve as her primary care physician (PCP). After getting to know Catherine, her PCP began to wonder if some nontreatment factors were contributing to her chronic fatigue condition. Her PCP tried, without success, to get her into counseling. Her parents were able to dissuade her from counseling, claiming that she "wasn't crazy" and did not need any counseling.

Her PCP had adroitly noticed that when Catherine's parents were away visiting other siblings or on vacation, her energy level seemed much higher. Co-workers who spent time with Catherine away from the office noticed the same thing. Her PCP felt she probably was suffering under the strain of her overly involved parents and, as a result, might be experiencing borderline depression that contributed to her chronic fatigue.

Despite her long-term remission, Catherine's parents had never given up on trying to get her to buy into "alternative medicine," first for her cancer and now for her fatigue. During one particular low point, Catherine relented to the pressure and agreed to go to an alternative practitioner for more "immune boosting" treatments, and to a local nutritional therapist for an evaluation. The nutritional therapist, unaware of the immune system treatments, suspected that Lyme disease was the root of her fatigue and referred her to an infectious disease specialist to rule out that possibility. The infectious disease specialist confirmed the Lyme disease. The specialist diagnosed musculoskeletal syndrome causing joint, back, and neck pain; sleep apnea; and an inner ear imbalance, all considered sequelae of Lyme disease.

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