The Best Test to Find Metastatic Choroidal Melanoma?

A patient asked me, what are the best tests for detecting metastatic choroidal melanoma. I told him about the use of total body PET/CT as well as abdominal MRI or CT or ultrasound imaging. We discussed the COMS findings that blood tests are not very sensitive. However, it became clear that no one knows!  That there is no standard method for detecting choroidal melanoma metastases.

Then I told him, “consider how much faster we could answer your question, which tests are best?, if we just collected data on the thousands of patients currently treated around the world.” No one would argue that it will take the results of thousands of patients to determine the best way to detect metastatic choroidal melanoma. Clearly, this will be an ongoing process as new technologies develop.

In that most therapies work best when metastases are caught early, can extend lives by determining how to monitor our patients for metastatic melanoma. An Eye Cancer bio-informatics grid (BIG) will allow hundreds of centers around the world to contribute their experience to answer the question, “what are the best tests for detecting metastatic choroidal melanoma.”

What Can be Done to Speed up Genetic Research?

Researchers from all over the world are studying how tumor genetics can be used to predict if a choroidal melanoma will metastasize. However, in one clinic they might obtain 100 DNA or RNA samples per year and it might take 1000 samples to answer this question. Imagine if  just 10 centers shared 100 DNA samples with the group. Now each could evaluate 1000 tumors in one year. This simple act of sharing tissue could speed up genetic research (at each center) by 9 years.

Now consider if we had the foresight to develop Eye Cancer Tissue Banks ten years ago. Then we could both share tissue on 10,000 patients, but also have 10 years of follow up to determine who actually developed metastatic disease.

Thus, the Eye Cancer Bio-Informatics Grid (BIG) could give them the long-term survival data they need to test their theories (over a much shorter period of time). Clearly, an eye cancer bio-informatics grid will speed up research and save vision and extend lives.

Is this New Treatment is Better Than the Old One?

Currently, if Dr. John Doe invents a new treatment for retinoblastoma, he will present his initial promising results at an international meeting and publishes it in a scientific journal. Further, if the technology is widely available, multiple centers typically start treating patients. 

An Eye Cancer Bio-Informatics Grid (using standard methods to diagnose, classify and follow up patients) would allow these patient outcomes to be collected and compared to patients treated by other, more classic methods.  Thus, by collecting the results of small numbers of patients treated at multiple participating institutions, the Eye Cancer BIG can allow for early detection of treatment failures as well as providing proof of new treatment improvements. Early detection and publication of treatment failures will save both vision and life.

What about Rare Tumors?

I have a patient who wants to investigate environmental factors that might cause adenoid cystic carcinoma of the lacrimal gland. But most centers see too few cases to even start looking.

The Eye Cancer BIG  would allow us to prospectively register/gather relatively large numbers of patients (from multiple linked institutions) with this rare disease. Once enough patients are registered, they could be sent a survey of environmental exposures to cancer causing agents. In contrast, it might take one center 20 to 30 years to gather a statistically significant number.

What about Data Preservation?

In the United States of America, doctors are required to keep patient records for 7 years (after their last visit). Then they can be shredded! Shredded patient data is lost forever.

In contrast, the Eye Cancer BIG database can be kept forever. It is electronic, easily transportable and does not take up valuable space.The Eye Cancer BIG  will allow future generations of doctors and researchers access to patient data, tumor characteristics and treatment outcomes. We must stop throwing away valuable information that could be used to help future patients like our children and our children’s children.

Let’s find a Cure for Metastatic Choroidal Melanoma!

Right now, thousands of patients with metastatic choroidal melanoma are being treated around the world. However, there is no Eye Cancer BIG database to collect and examine their outcomes.

Imagine if we found that hundreds of patients from 10 or more centers exhibited a partial response to treatment Q (as apposed to 10 or so patients from one center). Pooled findings suggest a larger more valid finding, a reason to undertake a statistically significant cooperative study of treatment Q. Right now there is no Eye Cancer BIG metastatic choroidal melanoma database, no record of treatment outcomes nor coordination of treatment effects.

Interested in speeding up eye cancer research? Interested in finding cures that preserve vision and life?  The EyeCare Foundation cannot fund this project alone. Please consider a donation for the Eye Cancer BIG Project.