Anne Marie

I never asked why me, it was just meant to be.  In 2006, I was diagnosed with Choroidal Melanoma in my left eye.  I had no signs or symptoms and no clue that I had cancer. Physically I felt fine.

My journey started about 7 years prior, at the age of 33 when I went to my local “big box store” to get my eyes checked, as it had been about 8 years since my last exam.  I had 20/20 vision in both eyes, so no need to worry about anything, until the optometrist informed me that I needed to see an ophthalmologist right away to rule out a tumor in my eye.  I was fortunate enough to get an appointment the following week at the local teaching hospital.  The retina specialist diagnosed me with a melanocytoma, nevus, or “freckle” on my optic nerve and performed laser surgery to destroy the blood vessels within the freckle. I was informed that 99% of the time, nothing ever changes and many people have freckles in their eye and don’t even know it.  At the time, I felt confident and had no need to research more about this “freckle”. 

The “freckle” was monitored every six months with no change, until August of 2006.  At that time my doctor informed me that he thought that he saw some growth, and he wanted me to have an ocular sonogram.  Unfortunately the only “local” doctors who had the equipment to perform this test were in NYC or Philadelphia.  Now a little fear began to creep in and I began the task of identifying which of these doctors took my insurance.  In one word, none.

Since none of the three doctors took my insurance, I went with the first doctor my retina specialist recommended.  Needless to say when I researched this doctor he referred me to, I found out he was an Ocular Oncologist.   Eye Cancer, was this really a possibility.  I had never heard of it. The information I was reading was very scary. Ocular melanoma is a very rare cancer with very few treatment options and almost none if it metastasizes to the liver.  One treatment was removal of the eye, the other 2, plaque or proton beam, didn’t seem like pleasant alternatives.

I had my first appointment and after battery of dilated eye exams, including photographs, florescene angiographs, etc. by one of the doctors, we met with the ocular oncologist, who was very kind and welcoming.  He was also very direct, which I appreciated.  He reviewed all of the information from the referring doctor, all of his testing, including performing a sonogram of the eye.  He informed me that I had the signs of choroidal melanoma and his suggestion; since it was small (2.3mm) was to wait about 8 weeks and re-measure it.  If it grew in that time, the definitive diagnosis would be made. We agreed to return in 8 weeks.  What complicated the situation even more was the location of the tumor; it was on and in the optic nerve.  The nerve that carries the image to the brain, so that you can see.  I was going to lose my vision, but was I going to lose my life as well.

 “My goal is to save your life, your eye, and then your sight,” my doctor said compassionately to me.  This kept repeating in my head for the next 8 weeks. 

The countdown to my next appointment began and I started to research CM.  I vacillated between wanting to know everything there was on this disease, and not wanting to know anything, because everything pointed to very poor outcomes.  Too much information, too fast, it was so overwhelming.  I began to read the posts on the Eye Cancer Network message board from other patients experiencing the same thing.  This was extremely helpful as was talking with 2 patient advocates from the EyeCancer Foundation and knowing that I could call or e-mail my doctor at any time. 

Relief arrived after the 8 weeks were over and we returned to the doctor.

We discussed the confirming diagnosis, options (plaque radiation therapy), and second opinions.  The tumor had grown rapidly to 2.8mm.  I was an excellent candidate for proton beam therapy because of the location, but I felt so confident in my doctor, there was no need to seek a second opinion. He was supportive, confident and re-assuring and went over the details of the surgery.  He was going to use a special, “slotted” plaque that he had invented and used on 2 other people.  He did not conduct a biopsy as he felt that biopsying the tumor puts the patient at risk and does not feel it’s a necessary step in confirming the diagnosis.

Dates for pre-op testing and the surgeries were set.  I felt so much more relaxed at that point and was looking forward to having the surgery and moving on with my life.  I did not like waiting.  I was able to return home in between surgeries, but had to be a minimum of 6 feet away from people at all times.  Being somewhat isolated from others for 7 days, wasn’t as difficult as it sounds, however staying away from my dogs proved more challenging. 

I was very fortunate as I didn’t experience any pain, just discomfort, which is exactly what everyone had told me.  Once the stitches began to dissolve, my eye became somewhat itchy, but not unbearable.  The muscles around my eye had been cut, so they felt a bit tight.  I was feeling good and wanted to return to work ASAP, I was bored.  My eye was red, but there was no obvious swelling and no bruising. 

Since the surgeries, the sight in my left eye has diminished greatly and 5 years later have no vision.  I’m ok with that as I still have my eye. What’s more important is that I have my life.  “My goal is to save your life, your eye, and then your sight”. 

The last 5 years have been a journey that I don’t wish on anyone, yet I wouldn’t change one thing about my experience.  I have been extremely fortunate to this point; however I know that I can never feel confident that this disease won’t return.  I have diligently followed up on my twice yearly MRI’s and quarterly checkups with my ocular oncologist, who I can’t thank enough.  I’ve created a support network in my area that now includes about 30 people battling this same disease.  We are all at different stages in our journey, from recently diagnosed to 15 year survivors!  I have met some of the most amazing survivors of this disease and have developed very close friendships that I hold dear to my heart. 

All of the online support has also been a tremendous help.  Ocular melanoma is not a common cancer and most people have never heard of it.  Approximately 2400 people are diagnosed each year in the United States with this cancer; that makes it an orphan disease.  This is why the Cure OM initiative by the MRF is such a big step for those battling eye cancers.  We will finally have a prominent organization working towards bringing this rare cancer to the forefront with the goal of finding a cure.