#EyeGetDilated: Ocular Melanoma Awareness – Allison Dashow

Guest Blog by Allison Dashow, an ocular melanoma survivor: 

On June 1st, 2022, just weeks after graduating from my doctoral program in clinical psychology, I was diagnosed with Choroidal Melanoma. At the time, I had been experiencing intermittent, shooting eye pain which I ignored as it “wasn’t that painful.” But after casually mentioning this to my therapist, she urged me to see a doctor because it was my eye (and to this day I thank her for saving my life). I visited a local ophthalmologist, who then referred me to a retina specialist. Initially, the doctor consulted with his colleagues, and they thought it was a benign nevus and diagnosed me with choroidal neovascularization, but at the end of the appointment, one of the doctors requested that I seek out a second opinion. Days later, I was diagnosed with a cancer so rare that it occurs in just 6 in a million people. I didn’t fit the typical profile – a brown-eyed 26-year-old (this cancer tends to affect older adults with light colored eyes).  

Just under 4 weeks post-diagnosis, I underwent plaque brachytherapy to radiate the tumor. My ocular oncologist informed me that I was at low to moderate risk for developing radiation retinopathy and noted that it typically occurs 2.5 years post diagnosis. I guess my body decided that it had to be special and different, so on top of getting this rare cancer diagnosis at such a young age, I developed radiation retinopathy approximately one year post diagnosis. I now undergo frequent anti-VEGF injections to slow down the progression of the disease as it will eventually cause significant vision loss as well as other potential complications. Initially, the injections helped, but my retinopathy began to progress. As a result, I have now been switched to a different medication and from a 6-week to a 5-week interval for eye injections.  

I often tell people that treating the tumor was the easy part. The hardest part is living with the reality that this cancer carries a high risk of metastasis to the liver and lungs. Unfortunately, there is currently no cure, and the prognosis is quite poor (survival rate – 2 years). So, I undergo scans every 4 months to monitor for metastasis. I typically request Taylor Swift music in the MRI machine so that I can feel as though I am at a Taylor Swift concert, as opposed to thinking about the fact that I could potentially receive life-altering news.  

Throughout my journey, I’ve been lucky enough to have incredibly supportive loved ones who are there for me each step of the way. Whether it be family, friends, my partner, coworkers or fellow ocular melanoma (OM) survivors, I always have a loving support system around me. While I’ll never understand why I have this cancer, I have been able to find silver linings along the way. Whether it’s sharing a delicious treat/dessert after every appointment/scan with my mom, attending MRF’s CURE OM Eye on a Cure: Ocular Melanoma Patient Symposium or spending a transformative weekend with other young adult cancer survivors at MRF’s Adult Youth Adolescence and True North Trek’s Walden Institute retreat in Michigan, I’ve learned to savor every moment.   

OM is rare, which means it receives limited funding and research. This lack of resources reduces our chances of finding effective treatments for metastasis compared to other cancer. Most people I’ve encountered, even some within the medical field, have never even heard of OM.  

Since my diagnosis, I have learned the importance of getting an annual dilated eye exam as that is the only way to detect this cancer. I’m committed to raising awareness about OM and would encourage everyone to undergo annual dilated eye exams #EyeGetDilated. Lastly, a special thank you to Revo, leader in sun–protective eyewear, for their support of the OM community and helping advance MRF’s mission.