A cancer diagnosis is overwhelming for both the patient and their caregivers. There is so much to absorb: the emotions, the drastic change in priorities and lifestyle, the treatments required, the financial burden.

In a recent Forbes magazine article, Elaine Schattner discusses an additional area of concern: Logistic Toxicity.

The term was coined by Shelley Fuld Nasso of the National Coalition for Cancer Survivorship (NCCS), a non-profit group that advocates for cancer patients. It describes the difficulties encountered by patients and caregivers surrounding the navigation of such matters as insurance forms and medical bill processing, arranging for medical appointments, juggling work schedules to accommodate those appointments, and researching potential treatments and treatment providers.

It can create a vicious cycle where the tasks are so overwhelming that they are ignored, leading to a more daunting burden in the long run. This can lead to an overall feeling of despair. It is important to circumvent logistic toxicity by forming a strategy.

Tips for not becoming overwhelmed may include:

  • Keeping all relevant information organized in labeled folders or binders.
  • Setting aside a specific time each week to review any bills, insurance EOBs, test results, etc.
  • Forming a “logistics” team that includes the patient, caregiver and any outside resources that can be relied upon to help.
  • Reaching out for help. Don’t be embarrassed to solicit assistance from outside sources such as The Life Raft Group, cancer advocacy organizations or social services organizations.
  • Maintaining a calendar with important dates for appointments, tests, and dates when bills are due.
  • Making sure that all tasks are broken down into manageable parts. Don’t try to make all calls to providers or insurance companies in one day.

According to Dr. Yousuf Zafar of Duke University’s School of  Medicine who is quoted in the article, “Patients struggle with this all the time. One common example  I’ve seen is that patients miss appointments due to errors. In another instance, a minor mistake on a patient’s disability form led to additional paperwork, and months of delay for needed assistance.”. (Forbes. August, 2015)

Available Resources for Logistical Toxicity

While there are many resources for the physical, emotional and financial burdens, there are not enough available for “logistical toxicity.” Patients and their caregivers still need to be their own advocates, reaching out to any and all sources of support.

The Life Raft Group provides a comprehensive  listing of resources for GIST patients.

In addition, Cancer.net is an excellent source of information. Your local medical center may also be a good source for additional support, with patient advocates and social workers available for consultation.

Mary Garland
Author: Mary Garland