Excerpted from “A Patient’s Guide to Understanding Cutaneous Lymphoma”
The best way to manage a disease like cutaneous lymphoma is by assembling the right team of physicians and support individuals to guide your treatment course and help you through each stage of the journey.
Members of your healthcare team may include a combination of the following individuals:
- Dermatologist – A doctor who specializes in diagnosis and treatment of skin diseases. Some dermatologists specialize in treating cutaneous lymphoma.
- Oncologist – A doctor who specializes in diagnosing and treating cancer. Some oncologists specialize in cutaneous lymphoma.
- Radiation Oncologist – A doctor who specializes in radiation to treat cancer.
- Nurse Practitioner – A registered nurse with advanced education and training who can help your doctors manage the disease, symptoms, and side effects.
- Social Worker/Clinic Coordinator/Patient Navigator – This person is tasked with looking at logistics and helping patients plan their course of treatments. This is a person who can help guide patients when they face treatment challenges such as having to travel 50-100 miles for light therapy, communicate with insurance companies, etc.
- Pharmacist – An expert in medications who understands and can advise on the use and interactions of medications, and help doctors review allergies and drug-drug interactions (which are common).
- Financial Counselor – This is an individual, often within the doctor’s office, who helps empower patients to navigate their insurance policy, plan for additional uncovered treatments and otherwise meet the financial demands of their course of treatment.
- Psychosocial Therapist – This person can counsel you through the emotions you have and outcomes of your disease.
- Nutritionist – This person is an expert in providing strategies for finding the right foods and nutrients you’ll need to sustain you through treatments.
Many people with cancer feel better when they play an active role in their own healthcare.
Before selecting individuals to guide you through treatment, educate yourself on the available options and interview potential providers before including them in your team. Keep in mind the following steps as you proceed:
- Gather information to make treatment decisions with your healthcare team.
- Write down your questions about your illness, treatment, or side effects and take them with you when you visit your doctor.
- Tell your healthcare team how you are feeling – physically AND emotionally.
- Learn about treatment choices/options and potential side effects.
- Seek relief from itching or pain.
- Ask others for support.
- Assign important tasks or chores to friends and family when needed.
- Ask care partners to help with insurance matters as they arise.
- Find a reliable partner to drive you to and from treatment
- Take a family member or close friend along to doctor appointments. This person can help you ask questions and write down or remember answers.
Family members and friends can offer great support and accompany you to treatment appointments or just be there to talk through the various emotions you may experience as you follow the course of your disease.
Community of Patients
Individuals diagnosed with any form of a serious disease find comfort in connecting with others who have walked a similar path. Your healthcare provider or your treatment center can connect you with others who have experience with your particular diagnosis. The Cutaneous Lymphoma Foundation is an excellent resource for helping you connect with others.
Some patients find it comforting to include a spiritual advisor from their faith community in their support team.