#EyeGetDilated: Ocular Melanoma Awareness – Cindy Schulz

Guest Blog by Cindy Schulz, an ocular melanoma survivor:

“Hello, my name is Cindy and in December 2002, my entire world changed. Until this time, I had gone for yearly eye exams, had no symptoms or indications anything was wrong, and I expected that appointment to be no different. My eye doctor told me I had a freckle in my right eye and that I needed to be seen by a retinal specialist who told me I had choroidal melanoma – an ocular melanoma (OM) cancer – in my right eye. My entire world came apart that day with my head swimming with questions and I don’t really remember driving home. I was 30 years old with small kids, a full-time engineering job and was also suddenly a cancer patient. Due to my age and the cancer being close to my central vision/optic nerve, the retinal specialist did not want to do traditional plaque radiation therapy on me. We elected to do multiple sessions of TTT (Transpupillary Thermotherapy) across several months in 2003. The tumor appeared to respond well to TTT and after several months, I was going in for dilated eye exams every 3 months that became every 6 months. Things were stable until 10 years later when during one of my “normal” 6-month eye exams, the retinal specialist discovered a cancer tumor growing again. OM is already a rare cancer but having it twice in the same eye put me into a completely different category. We did not want to use plaque therapy this time either since the tumor was still near my optic nerve and central vision. After lots of research and discussion with my doctor and other doctors, we elected to do PDT (Photodynamic therapy) since we could not do TTT again as the new tumor did not have pigment. The second tumor turned out to be much harder to kill and I spent 4.5 years in active cancer treatment. We shrunk the tumor to a point, but PDT treatments stopped working so we switched to a green argon laser. After a couple of treatments with the green argon laser, we had to stop as I was losing additional vision, above the 1/3 I lost with the first tumor, which didn’t make sense with the new tumor was coming out of the old one. We were not sure if the tumor was dead or alive – if it was dead, we should not keep treating it and losing vision. If it was alive, we should be treating it to kill it. We elected to watch the tumor closely and I remain in a state of “watching” today with dilated eye exams every 2 months (#EyeGetDilated) and will be doing this for the rest of my life.

The MRF’s #EyeGetDilated campaign holds a special place in my heart – had I not gone in for my dilated eye exams, my life would be drastically different – I could be blind or worse. After both times I was diagnosed with cancer, I had friends and family say my journey motivated them to go get their annual dilated eye exams. I have had some truly amazing people who have been on this journey with me, and I am so thankful to have them in my life. I do not know where I would be today without my amazing support system of friends, co-workers and family members.  I relied on my support system to celebrate good days, support me through bad days, help get me to my many appointments and help do research. To those people in my support group, you mean the world to me – thank you will never be enough to express how much you mean to me.  In 2020, I was introduced to the Ocular Melanoma Support Alliance (OMSA) and attended my first zoom support group as part of MRF. Although it was hard to relive my cancer journey, I also found a bond with this group of total strangers as we all shared an OM diagnosis, fears, questions and the desire for understanding. Everyone’s journey was different, but the support of this group was something I wished I had years earlier. Through OMSA, I learned about the Eyes on a CURE: OM Patient and Caregiver Symposium and attended my first one in May 2024 where I got to meet some of the incredible OMSA group in person.

I am excited that Revo eyewear has chosen to partner with CURE OM to help extend the MRF’s mission. Revo makes amazing eye wear and for someone who loves to spend time outdoors, good protective sunglasses are mandatory. As a systems engineer who worked on multiple moon and Mars missions for NASA, I love that Revo sunglasses are truly out of this world having been born out of a NASA developed optical coating to protect the astronauts. Thank you Revo for partnering with and supporting the MRF and CURE OM’s missions that are definitely dear to my heart with great looking sunglasses.

I know that I will be a cancer patient count ‘1 of 1’ for the rest of my life based on my own OM journey but I don’t let cancer define my life. I continue to live my life, do the things I want to do and create memories with my friends and family. Whether I am outside hiking, running, camping, snow shoeing, traveling or just enjoying time with my friends and family, in my Revo sunglasses I know I am getting great eye protection in good looking glasses.

I encourage all of you to go get a dilated eye exam to protect your vision so you too can get outside to enjoy the beauty of nature. See you outside.”