Carolyn

It was March 2025, and it was supposed to be a night of celebration in East Gippsland for our 30th wedding anniversary. Instead, after a daytime routine optometry appointment, my husband and I found ourselves at The Royal Victorian Eye and Ear Hospital in Melbourne, over 4 hours’ drive away from home, trying to process the shocking diagnosis of a rare cancer.

 I had never heard of ‘ocular melanoma’. I didn’t have any signs or symptoms, I was fit and healthy, and this situation seemed totally surreal.  But doctors were able to confirm this diagnosis following a dilated eye examination and an ultrasound of my eye.

One week after diagnosis, I returned to the Eye and Ear hospital to have my tumour measured up. The Peter MacCullum Cancer Centre then prepared a radiotherapy plaque based on this information, and it was sutured onto my eyeball in a surgical procedure at The Royal Victorian Eye and Ear Hospital 8 weeks after diagnosis.  Because I was radioactive, I needed to be in an isolation room, which meant visiting restrictions were in place until after this was removed 5 days later. My eye was covered during this time apart from when staff cleaned and instilled eye drops.

My healing and vision were on track, according to doctors at a follow-up appointment at The Royal Victorian Eye and Ear Hospital. The next appointment will be at the 3-month period, where the tumour will be remeasured, and biopsy results will be available so a future management plan can be determined.

I was given the diagnosis of ocular melanoma, and this was the first I had ever heard of this rare cancer. I left the hospital with no written information. It was difficult not knowing about the cancer and finding reputable resources, particularly when I was in shock. I really needed to understand what it was before I could try and explain it to others.

I really wanted to speak to someone else with this condition. I was unable to find a peer for support until I joined the Ocular Melanoma Facebook group, and I had a friend of mine call me and she said she also was recently diagnosed with this cancer and had received the same treatment that I was about to undergo.

I am still on a steep learning curve as I seek to learn more about ocular melanoma, but the initial shock following diagnosis has been the hardest.

I phoned Melanoma Patients Australia in the first week following my diagnosis, seeking reputable information and support. Following the initial intake process, I have received many phone calls, emails, and telehealth sessions with the nurses from Melanoma Patients Australia. They have been a fantastic resource before, during and after my treatment. Lucky for me, one of the nurses is a subject matter expert on ocular melanoma and the support she has provided my husband, and I has been so beneficial in many ways.

I am publicly sharing my lived experience story of being diagnosed with the rare cancer – ocular melanoma in the hope that it will raise awareness and encourage others to get an eye check done at the optometrist and request an additional dilated eye examination.

I’ve learned that cancer screening is mainly for common, rather than rare cancers. However, because I’ve had this happen to me with no signs or symptoms, I feel a need to share widely with others as early detection saves lives!

Focus on things that you have control over rather than those you don’t.

 I’m with my family and in nature.