My Ocular Melanoma: Rob’s Story

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.

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.

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.

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.

This is how my eyes looked 4 days after the surgery when four markers were placed around the tumor that is behind my left eye (right side as you view). Not too bad, eh?

This morning was the simulation run for the proton radiation treatment where the physicists and doctors checked their initial measurements and x-rays against their plotted path for the proton beam. I’m happy to say that all went well with only one small adjustment to the measurements. The simulation took about 45 minutes and we were done. Christine, one of the BC Cancer Agency’s technicians was there to help me through the first stage of creating the mask and today’s simulation run. She’s been a part of this program since the beginning and knows all the answers for the questions we’ve asked. Very comforting.

I am prepared now for the actual 4 days of treatment. I’m even sure that I will be able to hold my gaze on the flashing light for up to 90 seconds, the time needed for each beam to be sent into the tumor.

Friday is when treatment starts for real. I may have some ‘sun burning’ or discoloration of the lower eyelid and permanent loss some of eyelashes but no other side effects are anticipated.

It seems that this treatment becomes sort of a show for visiting doctors from other areas of Canada and maybe other countries, as well as trainees of the BC Cancer Agency and other related fields to observe and learn of this type of cancer treatment. Triumf has celebrated their 10th year anniversary in 2005 and is still one of a handful of places that offer proton radiation treatment in the world. Not many places can split an atom to shoot protons into an eye tumor.

Sheila has taken pictures of the Dr. Ma, Christine and two other physicists that managed the simulation today as well as myself fully set up in the chair, mask and all. I will have pictures posted once we return home.

I look forward to returning home and leaving with pleasant memories of the experience and leaving this ocular melanoma behind.

Today was the first day to the Triumf Proton Radiation Center at UBC.

The day started early enough, up at 6:00am so we could get ready and have breakfast before our trip to Triumf began. Luckily, when we arrived at Triumf at 8:20am we were met by Cathy, one of the technologists (if that is her proper designation, I’m not sure) as our taxi pulled up. She happily greeted us and walked us through the entry point (which is rather secure) and down two stories to the actual proton radiation ‘clinic’. I use the word clinic but I’m sure that does not accurately describe the small waiting area and the technology filled offices and areas that comprise the cancer treatment area. Sheila had to wear a radiation dose meter in case she get’s exposed to an abnormal radiation level. Oddly enough it seemed I was the only person not wearing a dose meter.

I was overwhelmed with the systems in place to use protons to fight the cancer I have. Triumf is the center where subatomic particles are sped up, slowed down, broken apart, examined and everything else that physicists do with a machine as big as a hockey arena that shoots things around that you can’t see with your naked eye. As this is the only proton treatment system in Canada it does not seem to have any superfluous decorations to properly designate the specialty treatment available. In all fairness, the staff are wonderful with a mix of technologists, physicists, oncology and ophthalmology doctors in attendance. All for me and my very rare cancer. I was told that in an average year 7 to 12 Canadian patients may be treated for ocular melanoma at Triumf. Again reinforcing the rarity of this cancer and its treatment options. If proton radiation was not available the only other treatment would be to have the eye removed to stop the cancer growth. Thank goodness there is now this option to save the eye and what little vision remains.

I was first given a short tour of the waiting area (really a 12 x 12 foot room) and the other areas where the treatment would take place. It almost seems like a mad scientist’s lab of sorts.

The first step after acquainting me with the equipment was the creation of ‘the mask’.
The mask will hold me immobilized to ensure as little movement as possible as the proton radiation beams are directed at the tumor. I just have to worry about the fractions of movement I am still capable of, as well as blinking and eye movements. Any movement at all will cause the beams to be misdirected and could cause further problems during this treatment, so it’s important to not move! They also have a technologist watching a camera view of my eye, as well as the doctors, so if I do move they can interrupt the beam and start over with no harm being done. The worse part of the mask is the biteplate that is also used. The bite plate is needed to help hold the head in place. So, while all else is happening you have this plate in your mouth also helping to hold you immobilized. The bite plate is made from regular dental bite mold material that is wrapped around a steel plate mounted on a frame that the mask is also mounted onto. Think a horror image from the movie “Saw”.

The chair is a marvel in engineering and precision. Positioning is calculated by the 1/100 of a millimeter on 3 planes. I guess when you’re dealing with sub-atomic particles these measurement amounts are normal. But think of it this way, slice a dime horizontally 1000 times and each slice is a proper measurement for the proton beam. That is the level of proton beam depths required.

The next step was taking x-rays of my eye while immobilized in the chair with the mask on. This is so the physicists can project the correct paths for the beams to be pointed at and the depths needed with extreme precision. This is also why I needed to have the tantalum clips placed around the tumor in my previous surgery. Without the tantalum markers there would be no images in the x-rays to work from as the eye and tumor is simply a fleshy mass in x-rays. The markers provide the doctors and physicists to see the outer edge of the tumor and correctly identify the size and areas of the tumor as they plot the proton beam’s paths.

In all this visit took about 2 ½ hours. The simulation is the next step, on Wednesday. Not only practice for me to be able to stay still and watch blinking lights but so that the doctors and physicists can be certain of the paths they have decided on. I didn’t actually think that this whole procedure would be as comfortable as it is, so I do feel a lot of relief about the next steps.

Back to the hotel by about 11:00am and free time until Wednesday morning. Yeah!

Today is the day after my eye surgery. I have had 4 tantalum clips placed aound the tumor behind my eye. The eye is actauuly turned around and pulled out as much as they can to place the clips. UGH.

I am not nearly as beatup looking as I thought I would be, no bruising but there is a lot of swelling around the eye and eyelids. The eyeball itself has a lot of red, possibly broken or excited blood vessels.

There is discomfort, which I was told to expect. It actually feels like I was hit on the head and that there is a pine needle stuck in my eye.

I have a prescription of 3 different types of eye drops to use. They are to keep infection away and keep the eye moist. One is twice a day the other two are 4 times a day.

I have noticed a little oozing from the eye but not so much that I have to be concerned about. I was told that if there is a lot of discharge I should go to emergency as soon as possible.

I have pictures of how I look but cannot upload them until I am home again, in about 2 weeks. I look a lot better than I thought.

Monday starts the proton radiation treatment. I first go in to have the mask created that will hold me still during the treatment, movement is not allowed! Then I go in for a simulation run so I am prepared for what to expect during the actual treatment and also for the doctors to be able to indentify the area that will be aimed at by finding the clips that were placed in my surgery. A couple of days later the actual treatment begins and goes for 4 days.

Then home. I can’t wait for this part to be over.

Yesterday I visited my family doctor and got the results of my chest xray and blood work. Was I tense… yes. Scared? More than I could tell you.

The good news is that the chest xray showed nothing abnormal. The blood work also showed nothing abnormal. Maybe I’ve been spared the cancer spreading. I’m not so sure. With my first operation to place the markers around the tumor in my eye only days away I dread the possibility that I may still have to also undergo a biopsy of my liver to see what that spot is they saw back in July.

I get to have my eye turned almost inside out… maybe several needles punched through my abdominal wall…

Scared? Maybe a little. Tense? Yes, a lot. Hope? Slipping away every second. But hope being lost I know is only because of the waiting. Months become weeks. Weeks become days. Days will become hours.

And I am wound as tight as any Swiss clock. Thank God for Sheila being able to hold me together.

Here it is, late night October 2.

I have 9 more days until we (Sheila and I) begin our trip and arrive in Vancouver and on the 12th my eye operation is scheduled where I will have the markers/plaques placed around the tumor behind my eye.

I still can’t believe all this is happening. It all seems so unreal.

And the waiting… waiting… waiting…

Sleep is always a great idea, right? Well for me I buy new domain names and plan out more ways to create content for the web. 2 new domains today. I will save the work for all the waiting time in Vancouver. 14 days, 5 operations and treatments. Plenty of healing days. At least the hotel has high-speed internet access. I can work or at least try to.

Now, sleep. I’m tired. Stressed. And tired.

I have added the handout about the TRIUMF treatment center. The document discusses the basics of proton radiation treatment. It’s in PDF format so you should be able to easily view it by clicking on the link below:

TRIUMF document for eye treatment using proton radiation