As part of an ongoing initiative from the Eye Cancer Foundation, The ECF accepts submissions where patients share their personal story through diagnosis and treatment. Of course, the ECF is always accepting submissions for Patient Stories and would love to hear from you. Below is the first publication, sent in by a patient by the name of Maureen.
In December 1994, I went to see my optometrist, Dr. Quist, at Pildes in New York. I was going to Boston for New Year’s and my contacts were bothering me. Well, Dr. Quist pointed out that I had not had a good exam in a while and she wanted to do one. I said sure.
As she studied my left eye, she took a bit more time than she did with the right eye. Afterward, she wrote out a note, put it in a sealed envelope, and said that I should see my ophthalmologist. That was the beginning.
Upon consulting my ophthalmologist, Dr. Muldoon, I discovered that the little freckle Dr. Quist luckily saw was a possible cancerous condition which would have to be monitored. In May 1995, I went for what I thought would be another routine visit with Dr. Muldoon. It was not routine. After the exam, he asked his receptionist to see if Dr. Finger was in the hospital that day. He was, and I was sent down to his office at the New York Eye and Ear Infirmary. It was only when I saw the words Melanoma Study beside the door that I actually realized: Ah. Not just cancer, but melanoma.
In the blink of an eye, so to speak, life changed. I was immediately sent for the first of ever-so-many fluorescein injections and pictures, ultrasounds — the works. Dr. Finger observed the nevus until November 1995 and then decided that treatment was needed. At the time of all this I was a volunteer at Sloan-Kettering and I knew how helpful it was to speak to patient-to-patient volunteers. Well, there weren’t any; the ailment was so rare. My medical doctor, who had practiced for years, had never heard of it and had to research it. While having experience seeing the courage of the cancer patients I worked with, and the research being done with all sorts of cancers, I myself was scared enough with my disease to determine that I would go with enucleation for treatment. The idea of the melanoma was very upsetting to me.
Dr. Finger set me up with an appointment at Johns Hopkins’ Wilmer Institute, where they were doing the national study on ocular melanoma. My husband and I went to Baltimore for a consultation and I was grateful that I took the opportunity to participate in research. The doctor did the exam, discussed his findings and – what I remember most clearly – discussed prosthesis. The reality of removing the eye (which he was, in our opinion, recommending) was what I heard, and it was the dose of reality I needed.
In New York, my husband accompanied me to my next consultation with Dr. Finger. I had not involved him directly up until then – perhaps it was a way of not really acknowledging what was happening. But, Dr. Finger then launched into a description of Palladium-103, the isotope he planned to use to radiate the tumor, with hopefully a good chance at not affecting the surrounding tissue. My tumor was a choroidal melanoma.
I went for it. I was in the New York Eye and Ear Infirmary for 8 days – one day longer than estimated. While I was disappointed to have to stay even one day longer, in retrospect, the nursing care was much better than handling treatment on my own. From my room I had a view of the Empire State lit up for Christmas, and I still see that building out of my office window every day — with both eyes. I was released on December 13, 1995 – St. Lucy’s Day – Santa Lucia – the day celebrated as the festival of light.
I am fortunate to have had a good recovery and to have retained my eyesight. As I say, so far so good, and still, I go to each 6 month follow up with caution. I don’t think anyone would be arrogant enough to forget the trauma. I am grateful to this day to the two patients whom Dr. Finger put me in touch with, who spoke to me before treatment and shared their experiences. Only someone who has been there truly knows what the experience feels like. I have made two wonderful friends who took the road after I did.
Meeting with the fine, young doctors who are being trained through The Eye Cancer Foundation especially is truly inspiring. And I know that patients today have a wide support network with people who share so generously and bravely.
Dec 13 is my birthday. Didn’t know St Lucy was the patron saint if light. I to have chordial melanoma it was discovered 6 yrs ago on March 13. U have limited vision in that eye but have adjusted. Life is good. I enjoyed reading your story. Thank you
Dear Maureen, Thank you for sharing your story. I was diagnosed with Choroidal melanoma on March 12th of this year. It has been scary and challenging to deal with. I am however blessed to have such amazing medical care from Mass Eye and Ear Infirmary as well as Massachusetts General Hospital, Dr Evangelous Gragoudas in particular. His staff and the staff at MGH have been incredibly kind, supportive and caring.
I am so glad you were able to keep your vision and have kicked cancer in the butt!
I was diagnosed last month with ocular melenoma. My surgery was last week. I still have the radiation seeds in my eye. I will never forget the day I learned about this rare cancer. No one has even heard of this , I thought. Tomorrow I go back to San Francisco for the removal of the radiation. I feel positive but, this was a complete shock. Thank you for making me feel like I am not alone.