Questions to Ask Your Doctor Caregiver Guide For Primary Ocular Melanoma (OM), Metastatic OM and Caregiver Self-Care
FOR CAREGIVERS OF SOMEONE WITH PRIMARY OM At Diagnosis & Early Stages Ask the doctor: • H ow do you classify the tumor (size, genetics, stage if applicable), and what does that mean for treatment and follow-up? • W hat is the recommended schedule for eye exams, imaging or scans? • H ow will side effects from treatment (e.g., radiation, surgery) be managed? • A re there signs or symptoms I should monitor that might mean the melanoma is spreading?
Practical tips: • K eep a binder or digital folder for test results, imaging reports and doctor notes. • T rack all appointments and follow-ups on a shared calendar. • P lan transportation in advance for treatments or procedures. • E ncourage your loved one to share any changes in vision, pain or mood with their care team.
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FOR CAREGIVERS OF SOMEONE WITH METASTATIC OM During Advanced or Systemic Treatment Ask the doctor: • W hat are the treatment goals? • D o you recommend genetic testing of the tumor or blood to help determine clinical trial eligibility? • W hat clinical trial options are available now or in the future? • W hat side effects might occur and when should we call you or seek urgent care? • H ow can we best coordinate care between specialists, including ophthalmology, ocular oncology, medical oncology and others? • A re there supportive oncology or palliative services we should connect with early to support quality of life?
Practical tips: • K eep a current list of all medications, doses and prescribing doctors.
• R ecord symptoms and side effects daily to share with the care team. • A sk for copies of scan results and lab work to track progress over time. • P repare questions before each appointment and prioritize the most important ones. • B uild a “support team” of friends/family to help with meals, errands and transportation. Don’t be afraid to ask for help.
GENERAL CAREGIVING TIPS & SELF-CARE
• Be Present & Supportive — When possible, attend appointments, take notes and clarify instructions. Offer reassurance and patience during emotional moments. • Prioritize Your Own Health — Keep up with your own routine check-ups and ask your doctor about ways to manage stress, sleep and physical health. • Practice Daily Wellness — Take breaks, stay active, eat well and stay hydrated. Make time for joy, accept help and watch for early signs of burnout, like fatigue, irritability or feeling drained, so you can act before they worsen. • Seek Support — Connect with caregiver support groups, mental health professionals or respite care programs for temporary relief.
Caregiving comes with both rewards and challenges. By staying organized, fostering open communication and looking after your own well-being, you can better support your loved one and yourself. • Stay Organized — Keep medical records, insurance papers and important contacts in one binder or app. Track appointments, medications and expenses (some may be tax-deductible). • Communicate Openly — Check in often about your loved one’s needs, preferences and boundaries, even when the topics are difficult. Honest conversations help you both feel heard, build trust and make it easier to work together while respecting their wishes.
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Contact the CURE OM team at: cureom@melanoma.org
LAST UPDATED 11/2025 BY EXPERTS AND PATIENTS
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