Monthly Archives: October 2006

Ocular Melanoma Diagnosis Information

My name is Robert Lee, and I have Ocular Melanoma.

I am not a specialist, just a survivor of this very rare cancer. On this day I have completed the last of four proton radiation treatments at the TRIUMF Research Facility in Vancouver, BC, Canada.

During my first follow-up appointment (today) with my ocular oncology ophthalmologist Dr. Paton, she suggested a website that will allow other Ocular Melanoma patients to find information concerning this specific type of cancer and this is what I am attempting to do here. Dr. Paton will be providing me with information concerning diagnosis, treatment and other relevant information to help other Canadian patients dealing with this disease, themselves and their families, to better understand OM throughout the coming months (years), to help to find the information they need that is relevant to Canadian patients, their families and concerned individuals.

Please note that the information available here is NOT a substitute for professional advice and should be used for reference only. Please see your specialist!

Personal experience:
My first change in vision was March 28 2003. Like a light switch being turned on the vision in my left eye became blurry. As soon as possible I went to see my regular eye doctor. At the time I already wore glasses for poor vision in my left eye. A couple years earlier I was told by my optometrist that I have a differently shaped left eye that was causing me to have trouble seeing and was causing my headaches, the complaint at the time. He prescribed eye glasses which improved my vision and ended the headaches.
At this time he saw something behind my see and immediately referred me to an ophthalmologist to further investigate this change.

In the course of treatment I have had PDT treatments (Visudyne) and Avastin treatments (both described elsewhere in this website). The final treatment at the time of this writing was Proton Radiation treatments.

I was initially diagnosed with having a type of Age-related Macular Degeneration (AMD). Surprising since I was just over 40 but who am I to say?

Regular specialist follow-ups determined that the profile of the growth was actually a tumor, a much rarer form of cancer, Ocular Melanoma.

The treatments I have had are documented elsewhere in this website.

Things to look for:
Any change in your vision should be investigated by the proper specialist.

If no immediate determination can be made as to what is happening to your eye/vision be sure to have regular follow-up appointments scheduled. The eye is still very much a mystery and OM is not something that biopsies are performed for. You should have eye tests, images and pictures taken regularly, every 3 months, six months or annually as your specialist deems necessary. Ultrasounds. Maybe even Angiograms to help your ophthalmologist determine the right course of diagnosis and treatment. The rareness of this type of cancer (7.5 people out of one million is the common estimate for how many people will be diagnosed with this type of cancer annually), leads it to not be readily identified. In Canada more people will win second prize in major lotteries than be diagnosed with OM annually.

Often there is no outward sign of this type of tumor other than the patient experiencing a sudden change in vision. Or any type of eye tumor, for that matter.
Again: If your vision suddenly changes get your eyes looked at by a specialist.

Treatment 4 – The Final Proton Treatment

Monday Oct 23 was the final of 4 proton radiation treatments for me. All went off without interruption, again thanks to the wonderful team of doctors, care workers and physicists that are involved in the treatment of this very rare type of cancer. The 90 second treatment was divided into two parts so I have time to rest my eyes after the first 45 seconds. This change greatly aided in controlling my eye movements and the eye not wandering from the blinking light target. In what seemed like no time at all I was released from the chair with the treatments being concluded; and I was given the mask to keep. Thanks Patricia!

The proton radiation treatment will kill and shrink the tumor and related cancerous cells in the area of treatment, my left eye, over the next 12 months. It’s unlikely that I will regain any of the vision I have lost, the retina has been stretched by the fluid of the tumor and it’s not likely to re-level itself to be a flat surface that transmits vision correctly. I can live with this. I have a new eye drop to use for the next 3 months, until my first follow up appointment. Drops, drops and more drops. Dr. Paton, the ocular oncology ophthalmologist that is taking care of me is confidant that because of the slow growth of the tumor it is unlikely for it to spread. I will still have regular follow-ups of the eye tumor and we will see where this leads me in the future. Having such a dedicated and knowledgeable doctor on my site helps greatly to reduce the stress of the initial diagnosis for me and my wife, and I can confidently pass along the good news to family and friends.

Sheila and I were also given a tour of the TRIUMF facility (pictures to be posted in the pictures section) by the physicist that designed and built the control room. It’s quite the facility, involved in up to 25 nuclear research tests and trials at any given time, 24 hours a day. TRIUMF also houses a PET scanner, custom for other medical scanning procedures. Being that the TRIUMF facility is the only one of its type in Canada it’s amazing that resources are set aside to treat such a rare type of cancer with no additional costs involved for the patient, outside of housing and travel related costs during the treatment time span.

Now we have a day of rest then it’s a long drive back home to Kamloops to begin the regular schedule of everyday life once again.

Treatment 2 and 3

Saturday was treatment day 2. There was a mislocation of some of the pictures from my file so instead of having the treatment in the morning it was rescheduled for the afternoon. All went well and it was over before I knew it, taking about an hour from setup until I was able to leave. I am having a hard time watching the blinking light during the beam’s 90 seconds of treatment and the treatment was interrupted by Dr. Ma because my eye wandered from it’s target and changing the area where the beam is targeted to hit, so we had a restart. Other than that there has been no effects to myself that I have noticed. I have had no ill effects which is what I was told to expect. The proton radiation does not cause any effects to the patient other than possibly a permanent loss of some eyelashes if the upper or lower lid are within the treatment boundaries and there may be some sunburn-like tissue damage as well but that shouldn’t appear for while after the treatments have been completed.

Sunday was treatment day number 3. It went without any problems although again I have trouble watching the blinking light and the proton beam was interrupted by Dr. Paton when my eyes moved from watching the blinking light target. The blinking light tends to disappear from view after several seconds once the eye gets tired from staring at it. For the fourth treatment Dr. Paton has decided to break the treatment into two parts to allow me to give my eyes a short rest and be bale to hold my position better. Today’s treatment took only about an hour again, fast in and out is nice.

Treatment 1 of 4

Today I received the first of four treatments of proton radiation. I’m happy to say that due to the care and attention of the doctors, cancer technicians and physicists involved all went extremely well.

It’s incredible the amount of planning, checking and rechecking of measurements and proton radiation dosing that is required for the very quick 90 seconds of treatment that each session will take.

Being ‘masked’ into the chair to immobilize me so that I cannot move, having anesthetic drops into my both eyes to reduce the ‘blink urge’, having more x-rays taken to ensure the proper alignments and aim of the beam went quite quickly and after arriving at about 8:45am I was finished and on my way back to the hotel before I knew it. Sheila was able to take more pictures including the monitors used to watch me in my place and the beam as it is being used and my reactions to it.

Although the beam is invisible I had a feeling of apprehension when the procedure started only because I am fearful of not being able to watch the blinking light for the full 90 seconds without blinking or letting my eyes wander and cause the beam to be miss it’s mark. But I made it through without a hitch and the treatment was done in one attempt. It’s not uncommon for the patient to blink or avert their eyes and require the procedure to be stopped and restarted, that is what the doctors watch for, but I made it through. I just hope I am as ready again tomorrow.