Chapter 6 Castle Testing and Surveillance

My recovery from the brachytherapy was pretty uneventful and going back to work was not so bad. Good friends and coworkers made it so much easier.

I tried valiantly to not wear the patch. I had some dizziness and some nausea initially but I forced myself not to wear it and within a few weeks, I saw improvement in my symptoms and my ability to keep the eye open.

Now it was time to find an “MO” which is OMie speak for a medical oncologist.

I needed someone who would be able to monitor my disease with scans every 3 months to rule out metastasis.

The protocol as written by Dr Sato, who everyone in the OM community regards as the guru of all things metastatic, is to have a CT of the chest and an MRI of the abdomen, with focus on the liver ,every 3 months. There is also blood work for liver function tests and blood chemistry. This protocol continues for the first 2 years after diagnosis, and then every 6 months for 3 years at which point you can drop back to every year.

My first set of scans, done on the day after I was diagnosed were negative for metastasis. I saw Dr. Fulton for my post plaque follow up. I was really excited about that. Then he burst my bubble completely.

He informed me that 97 percent of people with Ocular Melanoma have clear scans on initial diagnosis. He went on to tell me that the biopsy he had taken from the tumor during the implanting of the radiation was sent to Castle Bioscience and we could expect results in a few weeks. The Castle testing grades the tumor based on genetic markers that are present or absent in the sample.

The grading of the tumor is Class 1a, Class 1b, or Class 2. A class 1a has a 2 percent chance of metastasis within 3 years and a 2 % chance of metastasis within 5 years. That’s the one I was shooting for.

Class 1b has a 7% chance of metastasis within 3 years and a 21% chance of metastasis within 5 years. Not horrible odds. That was doable. Better than 50/50 which is what I had read about in general for all Ocular Melanomas.

Class 2 is the most frightening with a 50% chance of metastasis within 3 years and a whopping 72% with metastasis within 5 years.

I waited. Then I waited some more. About 5 weeks out from my radiation I received a phone call that my Castle results were in. Drum roll please. Class 2, with a 72% chance of metastasis within 5 years.

Now, I guess if you are an eternal optimist, a glass half full kinda person, which I usually am, that means you have a 28 % chance of NOT having metastasis in 5 years.

I have an additional result from the Castle biopsy that showed it was PRAME negative. Negative sounds like a positive thing to have on a biopsy. After a little research I found that PRAME, (Preferentially expressed antigen in Melanoma) is tested along with the genetic testing, but has not been shown to alter the prognosis associated with Class 1 or Class 2 diagnosis. That was helpful. NOT!

Now that I had my results I needed to set up with an oncologist for my surveillance and I needed to make sure it was either an oncologist that had a great deal of experience with this type of Cancer, or I needed someone who was willing to listen and learn about the disease along with me.

I brooded over the prognosis for a few days.

I put on my big girl panties and went to work.

I contacted the oncologist who was currently caring for my Mother in Law I made an appointment. I had a couple of weeks before the appointment and it fell where my scans were also due as it had been 3 months since my diagnosis.

Time does fly when you aren’t sure how much of it you have.

I saw Dr. Anthony at work that weekend and in passing I told him I would be coming to see him as a patient in a couple of weeks. He looked at me curiously.

“

You mean with your Mother?” he asked.

My Mother in Law, Maudene, has triple negative breast cancer. She had been seeing Dr. Anthony about every couple of weeks during her chemo, and about every 4 weeks since then.

“No, it’s for me. I was diagnosed with ocular melanoma about 3 months ago and need you to follow me for surveillance.”

He looked at me strangely. “I have only had one other patient with that diagnosis,” he said , looking thoughtful, and then, “He died.”

He immediately realized what he had said and turned a little red.

I couldn’t help but laugh. When your having a casual conversation in the hall of the hospital it takes on a different tone from the serious behind closed doors type of consultation.

I briefly told him about my Castle results and the requirements for quarterly scans.

He said, “Sure, we can do that.”

MO is onboard. One more thing to cross off my list of OM duties.

I had my CT of the chest, MRI of the liver with Eovist Contrast, and my Labs scheduled for the following week.

This is where things sort of started getting back to a new normal. I would often note how different it is when you have the shadow of your own death hanging over you all the time. Everything is a little sweeter, more precious, brighter, and more important than it was before the cancer.

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