Demystifying Cancer Through Design By Andrew Connor
Breast Cancer 5 After treatment
Notes
Assessing radiation’s effects on cancer and your body
E
very year, more than 17 million people worldwide receive a cancer diagnosis, and many of them will undergo external beam radiotherapy, the most common radiation treatment for cancer. Yet despite its frequency of use, the procedure can be intimidating and unfamiliar to many patients, no doubt compounded by the uncertainty that a cancer diagnosis can bring. That is why Dr. Dan Golden, a radiation oncologist and associate professor in the Department of Radiation and Cellular Oncology at the University of Chicago’s Pritzker School of Medicine, had the vision of a portfolio of discussion guides that could help cancer patients through it. Working with Illinois Institute of Technology Institute of Design Clinical Professor Tomoko Ichikawa and her students, and with support from UChicago’s Bucksbaum Institute for Clinical Excellence, Golden brought his vision to fruition with a suite of discussion guides. “When the patient visits the radiation oncologist for a consultation, they are in a very vulnerable emotional state. Much of their normal life and the control they would typically have is diminished,” says Ichikawa. “We wanted to create something that was tangible, that empowered them with information so that they had some sense of what was about to come. We wanted to support awareness of the process, understanding of their experience, and engagement should they want to be active in their treatment pathway.” Called Communicating External Beam Radiotherapy Experience (CEBRE) discussion guides, the materials use graphic narratives and easy-to-digest information to facilitate conversations between patients (or their caregivers) and their medical care providers. The discussion guides focus on the process of radiation treatment, which involves
22
Illinois Tech Research
• Radiation’s effects are still at work in your body
FOLLOW UP
• Side effects (skin irritation, tenderness, fatigue) begin to subside 2-3 weeks after treatment
4-6 weeks after her last treatment, the doctor checks Beth’s side effects.
• Contact the clinic if your side effects worsen
Changes to her skin have become less noticable.
CONTINUING CARE
Doctors continue to monitor Beth long term. They watch for any side effects. Beth continues to have mammograms. She exercises to maintain her wellbeing and health.
MONITORING
EXAM
MAMMOGRAM
My Information DOCTOR’S SKETCHPAD
MY PLANNING SESSION
/
at
am
:
pm
Before my planning session, I need: blood work
physical therapy
see my plastic surgeon
stop these medications Customize, and print phone number section from file: Avery5352 EBRT DiscussionGuide phone no.doc
small tattoos
During my scan, I will receive:
days
Planning my treatment will take
weeks
TREATMENT INFORMATION
Throughout treatment, I will see my doctor every
M
T
W
Th
F
Before each visit, I need to: take pain medication
practice arm exercises
other MISSING APPOINTMENTS • Contact the clinic to reschedule • Each missed day will be added to the end of your treatment schedule • Long breaks between appointments could make your treatment less effective This work was supported in part by the Radiation Oncology Institute. For more information: Dr. Dan Golden dgolden@radonc.uchicago.edu
Treatment tracker
This work is licensed under a Creative Commons Attribution-NonCommercialShareAlike 4.0 International License. Make attributions to: IIT/Institute of Design and UChicago Medicine v.09.20
DISCUSSION GUIDE BREAST
Your radiation treatment pathway
1
visits (
boost treatments)
2
3
4
5
21 22 23 24 25
10
11 12 13 14 15
26 27 28 29 30
31 32 33 34 35
6
7
8
1 Consult
Beth has breast cancer and is about to receive radiation treatment. She’s here for her first appointment. The nurse and doctor examine her. They tell her what she needs to know about radiation.
Avery6870/8257 EBRT DiscussionGuide Logo.doc
CARE TEAM
WHAT IS EXTERNAL BEAM RADIATION TREATMENT?
Beth’s experience will give you an idea of what to expect. Your radiation treatment may be different. DOCTOR
Understanding your radiation treatment
NURSE
Behind the scenes
RADIATION THERAPIST
A machine called a linear accelerator—or ‘linac’—delivers doses of high energy rays. These rays kill remaining cancer cells in and around your breast.
Other members
HOW WILL RADIATION AFFECT ME?
may include medical assistant,
Planning session
social worker,
Determining the best treatment position
dietitian
Treatment planning
Treatment Visiting your clinic daily for radiation After treatment Assessing radiation’s effects on cancer and your body
PHYSICIST
NURSE
16 17 18 19 20
Customize, print logo on:
Discussing radiation treatment
Consult
Professionals create your custom plan
9
DOSIMETRIST
DOCTOR
What’s the goal of radiation treatment? I’ve heard some things about radiation. Are they true? What are the most likely short and long term side effects—during and after treatment? Can I still work and see people?
Radiation will not hurt. You will not see, smell or feel the radiation beams. In fact, you will not be able to tell that you are receiving treatment. Most people continue to work, engage with others and live their normal lives while undergoing radiation treatment. Please, however, allow yourself the space to heal and rest. 2-3 weeks into treatment, side effects like skin irritation, breast tenderness and fatigue may occur. Other side effects are possible.
If you experience any side effects or notice any changes in your health, ask your doctor or nurse. They are available every day if needed.
