NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here.
My name is Jennifer and I am from Holly Springs, North Carolina. I was diagnosed with choroidal melanoma, a rare type of eye cancer, in 2022. I’ve worn contacts for the last 22 years, getting routine eye exams yearly to keep my prescription up to date. In 2022, I went in to renew my prescription just like any other visit, planning to splurge and pick out new frames as well, since it had been a while and it is nice to treat yourself from time to time. However, at this appointment, my optometrist found a lesion on the top of my right eye that wasn’t present in previous imagery. They immediately made an appointment for me at the Duke Eye Center, where it was confirmed later that day that I had choroidal melanoma with localized detachment.
Just like that, at 36 years old, I had cancer and was at risk of not only losing my sight, but also further metastasis. There were no signs or symptoms, so had it not been for my optometrist encouraging comprehensive exams, I would have never known. Now, seven months later, I have completed my treatments and am on a path to healing that otherwise wouldn’t have been possible!
Diagnostic access means having the ability and financial security to get the tests and treatments you need, when you need them. This is especially important for people with rare cancers, as doctors and other healthcare providers may not be as familiar with them.
I am grateful that I was able to get the diagnostic tests and treatments I needed to fight my cancer, however, I acknowledge my privilege in doing so. I live in a health care mecca, meaning that getting an advanced screening at my optometrist visit was a no-brainer for me, but something I’m aware not everyone across the country has access to. Getting transferred into the Duke Eye Care Center the same day my lesion was found is a level of access most can only dream of. It saved my life, and for that, I’m forever grateful.
As a country, we need to do better. The level of care I have received “in my own backyard” is something we need to be able to provide across the country. Many of the other patients at the eye center travel 2-4 hours just to be here, and some even come from out-of-state. This makes you wonder how many people don’t get treatments because they live in an area where they went undiagnosed or, after diagnosis, they just couldn’t afford the travel costs, missed time from work, or healthcare fees needed to reach physicians who understand their condition. There are 97 ocular oncologists “near” me across the East Coast; there are zero in West Virginia, Kentucky… the list goes on. We need to do better for these underserved communities. Rare conditions might not be as rare as we think if there was better diagnostic access across the country.
The one thing I’d like people to know about living with a rare cancer is that it can be very isolating. There is often not a lot of information or support available, and it can be difficult to find others who understand what you are going through. While choroidal melanoma is treatable, your chances of metastasis are quite high, making “what if” a consistent thought in the background of everything you do. Developing a strong support system is key in the beginning to ensure that you have people to talk to and healthy outlets to help keep depression at bay. For me, social media has been a big help, as it has allowed me to connect with people all over the country with the same diagnosis. Knowing you’re not alone and having a network of people you can ask questions to makes a huge difference.