top of page
Have you been told you have Ocular (uveal) Melanoma?

Being diagnosed with ocular (uveal) melanoma can feel overwhelming. Along with processing the diagnosis itself, many people are faced with new medical terms, treatment decisions, and uncertainty about what comes next. Receiving a cancer diagnosis is never easy, but having clear information and support can help you feel more informed and in control.

​

Ocumel Canada is here to bring hope and support to those newly diagnosed, currently undergoing treatment, or living with no evidence of disease (NED). We’re here to help you understand your next steps, prepare for conversations with your care team, and connect with meaningful support. We invite all ocular melanoma patients and caregivers, at any stage, to reach out.

Plenty of resources are listed below, but you can always get in touch with us directly as well.

​

You can reach us at

1-800-460-5832 or info@saveyourskin.ca
​
Download our 'Questions to Ask your Doctor' reference sheet
Arm Around Shoulder

After Diagnosis: What Happens Next

After a diagnosis of ocular melanoma, your care team will work with you to confirm the extent of the disease and develop a treatment and follow-up plan. Because ocular melanoma is rare, care is often coordinated across multiple specialists.
 

Your next steps may include:
 

  • Referral to an ocular oncologist or specialized eye cancer centre

  • Discussions about treatment options and timelines

  • Imaging or blood tests to assess whether the cancer has spreadwhat is the size of my tumour?

  • Planning long-term follow-up and surveillance


It’s normal to feel a mix of urgency and uncertainty. If possible, consider bringing a trusted family member or friend to appointments and keeping written notes or copies of reports.

Understanding Prognostic Testing

Some people with ocular melanoma are offered prognostic or genetic testing on tumour tissue. These tests do not diagnose cancer or determine treatment in the eye, but they can help estimate the risk of the cancer spreading in the future.

​

Prognostic testing may:

  • Help guide follow-up intensity

  • Inform discussions about surveillance and clinical trials

  • Support long-term planning

 

Not everyone will be offered this testing, and choosing whether to proceed is a personal decision. Your care team can explain:

  • What information the test can and cannot provide

  • How results may affect follow-up care

  • Potential emotional and practical implications

Prognostic Testing and What It Means to Ocular Melanoma Patients

SEPTEMBER 2022

​

With Katherina Alsina, PhD, Castle BioSciences and Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre

​

This webinar helps patients understand the prognostic testing possibilities when diagnosed with Ocular Melanoma. It also discusses options for health care professionals for prognostic testing, what it can mean to patients and how it can affect treatment decisions.

​

Caregivers play a vital role after an ocular melanoma diagnosis. Supporting someone through treatment, follow-up, and uncertainty can be emotionally and physically demanding.

​

Caregivers may help by:

​

  • Attending appointments and taking notes

  • Helping track symptoms and medications

  • Providing emotional support

  • Assisting with transportation or daily tasks

 

It’s also important for caregivers to care for themselves. Seeking support, through peer groups, counselling, or patient organizations, can help prevent burnout.

Mother And Daughter

For Caregivers

NOTE: The information on the Ocumel Canada website is not intended to replace the medical advice of a doctor or healthcare provider. While we make every effort to ensure that the information on our site is as current as possible, please note that information and statistics are subject to change as new research and studies are published.

Content Acknowledgement & Sources

This page was informed by educational resources from:

​

 

All content has been adapted and rewritten for Canadian patients and caregivers and is intended for educational purposes only. It does not replace medical advice.

100% of Donations go to Patients

Making awareness and education available is crucial. Since 2019, Ocumel Canada has worked to raise awareness of ocular melanoma, focusing on education and the need for improved patient care.

bottom of page