According to a story from curetoday.com, a recent study indicated that many patients with uveal melanoma reported having unmet psychological and informational needs, particularly in the first several months after receiving their diagnosis. Patients with this cancer appear to be another group where doctors and providers should be doing more to help patients understand the implications of their diagnosis.

Uveal melanoma is the most commonly diagnosed eye cancer, but it is still quite rare, with only 2,500 cases of the cancer reported yearly in the United States. The cause of uveal melanoma is not well known, but people with lighter colored eyes appear to be at a greater risk. Tumors can affect various parts of the eye. Uveal melanoma is capable of spreading, most commonly to the liver. Metastases can appear nearly a decade after the primary tumor was treated. Treatment for uveal melanoma depends on severity; in the past, removal of the eye was a common solution, but this is now only conducted in cases where other options are not viable. To learn more about this type of cancer, click here.

Part of the problem is that not a whole lot is known about uveal melanoma. As a result, while patients are yearning to learn more, sometimes doctors just do not have the answers. Patients with uveal melanoma report the need for more information about the disease and about outcomes at greater rates when compared to patients with breast cancer or prostate cancer. Part of the problem probably stems from the overall lack of public awareness about uveal melanoma; it is easier to feel supported when other people have at least heard of the cancer that you have.

Many patients also disclosed that they feared that the cancer could recur. They did not know about how likely this would be. The study also demonstrated that people with smaller social circles tended to feel like their needs were being met more effectively than people with a large social group. But most importantly, people needed to have someone to rely on; after all, uveal melanoma often involves some vision loss that can make day to day activity difficult. Clearly, more study should be focused on uveal melanoma so that in-depth information will be available to patients. Additionally, spreading awareness is vital for helping patients with rare disease feel recognized and supported.

What are your thoughts on this rare type of cancer? How do you think a patient’s needs should be met? Share your stories, thoughts, and hopes with the Patient Worthy community!