Creating a Notebook

Article

Tips for keeping cancer information organized and accessible 

The amount of paper generated by a cancer diagnosis can quickly become overwhelming. Below are tips for ways caregivers can keep cancer information organized and accessible.

> Create a summary with cancer diagnosis details and the official treatment regimen and any other regularly needed information, important phone numbers and relevant details, such as the nutritional supplements the patient takes and other health issues.

> Keep a calendar for appointments.

> Document the procedures and treatments given and planned, including possible side effects.

> Write lists of questions for appointments. Store extra paper for note-taking.

> Keep sections for each doctor, as well as for pathology, radiology and lab reports.

> Get a business card holder to store contact information for the patient’s medical and support team.

> Bring waiting room entertainment, such as Sudoku, reading materials or crossword puzzles.

> Organize information into simple categories, such as treatment options, side effects and clinical trials.

> File all explanation of benefits, bills and other correspondence with the insurance company in one section. Take notes, including names and dates, of any conversations with insurance companies.

Various cancer nonprofit agencies, such as the LIVESTRONG Foundation and the American Cancer Society, offer free resources for patients and caregivers. Caregivers should visit cancer.org/caregivers to find a guide that discusses how to handle specific side effects and symptoms, as well as information on nutrition for cancer patients, pain control and choosing home care or hospice services. Downloadable worksheets are provided in English and Spanish at livestrong.org that cover treatment, legal and practical issues.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey. If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key. “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained. READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
Yuliya P.L Linhares, MD, an expert on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
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