At my one-month virtual follow-up with the UCLA retinologist, my retinal antibodies did not have results yet. I discussed with him on how the outcomes of my high dose steroid trial. Unfortunately, during the first two weeks (highest dosage which was then tapered down over the next month), I saw significant increases in flashes of lights, afterimages, and floaters. Finally, my eye pressure skyrocketed during the steroid trial (normally 10-14 mmHg and it increased to 27 mmHg in one eye and 24 mmHg in the other). During my discussion with him, I had asked if I would be expected to see a difference (improvement or stabilization) in that short of a time period. Unfortunately, if steroids were to work, I should have seen results while on the highest dosage during those two weeks and even once they started tapering. Obviously, this made clinical picture all the more confusing and unclear even to the UCLA retinologist. Until further was known, there was no further treatment they would try. I made another virtual appointment for 6 weeks out to discuss the retinal antibodies. A week later, I received a call that my results were back and the retinologist wanted to discuss the following week. Yay! The results came early but a little nerve-wracking that they moved my appointment up by 5 weeks.
Fast forward to the call with the retinologist, he discussed the three panels of retinal antibodies that they tested: (1) purely autoimmune (2) Cancer associated (3) Melanoma associated. From there, he discussed my results. No antibodies in the purely autoimmune panel. One antibody in the cancer associated panel and two antibodies in the melanoma associated panel. He discussed that this doesn't mean I have cancer, but the risk is higher and often the eye symptoms are prevalent prior to any obvious cancer symptoms. In theory, the cancer produces a protein that mimics the retina and the immune system responds leading to slower growth of the cancer, but destruction of the retina. He states to look on the positive "while you may go blind, it may save your life" by finding the cancer earlier. With the little knowledge I have on cancer-associated retinopathy (CAR), I ask about my specific antibody and if it is associated with any particular cancer so I could direct my screenings better and he actually has never seen this antibody positive before. Again, an enigma of a patient. He looks into it further and states there are case studies of endometrial cancer. Obviously, with melanoma associated retinopathy (MAR) it is most highly correlated with melanoma, a type of skin cancer.
Obviously, this was not what I had expected and it weighed heavy on my heart. As I usually do, I let myself mourn for an hour or so then began to plan for next steps. I told my husband and contacted my PCP to schedule an appointment for referrals for different specialities. At my virtual appointment with my PCP, I received a referral to dermatology, oncology, gynecology, a mammogram, and transvaginal ultrasound.