Doctors at Northwestern Medicine used proton therapy to treat the rare case of melanoma
When Debbie Hensley went in for her annual eye exam, her optometrist knew there was a problem with her left eye.
The 66-year-old retired schoolteacher from Kingston, Tenn., thought she might have a cataract. She was referred to a Knoxville, Tenn., retina specialist who diagnosed her with a detached retina. However, this was not the only concerning thing he found.
“I said, ‘do we want just the detached retina, or do we want something else?’” Hensley said.” He said, ‘I’d rather it only be a detached retina.’ So, I asked, ‘what is it?’ and he said, ‘you have cancer. You have melanoma of the eye that caused the retinal detachment.’ I had never even heard of eye cancer.”
After some shock at the news she had just received, she collected herself and asked the questions that she needed to ask.
“I pulled myself together and thought, you just have to do what you have to do,” Hensley said.
Ocular melanoma is uncommon and has two types. Hensley’s case was uveal melanoma, which are tumors that are found inside of the eye. This type of melanoma is very rare with only 2,500 cases per year in the United States, which equals about five patients per million.
Her tumor was caused by a freckle in the back of her eye that, over time, underwent an alteration of the genes in that tumor, resulting in a mutation that caused the melanoma. Only one in 8,000 freckles in the eye will turn into melanoma.
“I didn’t even know I had a freckle in the back of my eye,” Hensley said. “I wanted to be unique in some way. Just not this way. The doctor in Knoxville said there is nothing I could have done differently. It just happened.”
Hensley was referred to an ocular oncologist in Chattanooga, Tenn., who recommend proton therapy to kill the cancer since her tumor was partially wrapped around the optic nerve and was irregularly shaped, which meant it would be more difficult to treat in the traditional manner.
Only a few proton centers across the United States offer proton therapy for ocular melanoma, so she chose to come to Northwestern Medicine in Chicago and Northwestern Medicine’s Proton Center in Warrenville, Ill. In the span of just 12 days in October 2023, she went from getting a routine eye exam to traveling from eastern Tennessee to Chicago to begin treatment for the ocular melanoma. She received treatment from Chris Bowen, MD, director of ocular oncology at Northwestern Medicine
Proton beam therapy is a type of radiation that uses protons and is good at treating tumors that wrap around the optic nerve, are large, and/or are irregularly shaped. The proton beam is very precise in treating the tumor, which reduces the amount of damage to the surrounding healthy tissue.
“Another option for treating these tumors is removal of the eye,” Dr. Bowen said. “But we didn’t want to remove the eye because we knew we could both treat this tumor effectively while keeping some vision.”
Prior to Hensley starting proton therapy with Eric Nesbit, MD, radiation oncologist at the Northwestern Medicine Proton Center, Dr. Bowen needed to perform a surgery on her eye first. In a single procedure, Dr. Bowen took a biopsy of the tumor and placed tantalum ring markers on her eye.
“In order for proton therapy to be as precise as possible, we place tantalum rings on the back surface of the eye,” Dr. Bowen said. “It’s a very small, minimally invasive surgery where we place these markers in strategic locations. Then, when doing the proton therapy, the position of the rings and MRI imaging helps us determine the exact location of the tumor so the proton beam can zone in right where it needs to go.”
“I was not nervous,” Hensley said. “I trusted the doctors and I trusted in God. Dr. Bowen came in the morning of my surgery, checked my heart, and said, ‘your heart rate is completely normal.’ I said, ‘I am not worried. I am not scared.’ Because I have decided through all this ordeal – which was so unexpected – that I am going to each next step. Whatever comes next, that’s what you are going to do.”
Dr. Bowen then performed genetic testing on the biopsied tissue to find which mutation caused the melanoma, since different mutations have varying levels of risk of future spread to other parts of the body. He used the results to create a personalized management plan for ongoing monitoring of her case.
“Fortunately, she had a favorable prognosis,” Dr. Bowen said. “We also did next generation sequencing, which shows the specific type of mutation she had. This, too, was favorable. We take this step because, as for all ocular melanoma cases, if the cancer spreads to other parts of the body, that’s when it starts to become especially concerning.”
Hensley has now completed proton therapy and her prognosis remains good. As the tumor continues to shrink, the retinal detachment will resolve on its own. For now, no additional treatment for her eye is needed, but she will need ongoing surveillance, as anyone with any type of cancer does. Since ocular melanoma tends to spread to the liver first, her liver will be closely monitored. Most of her monitoring going forward can be done in her hometown in Tennessee with some follow-up visits to Northwestern Medicine in Chicago.
“Anybody that is thinking about not doing the treatment, please don’t do that,” Hensley said. “They are scared and worried, and it is kind of scary. For me, I turned it over to God and said, ‘you are going to have to do this. I can’t.’ I was led to Dr. Bowen and Dr. Nesbit. I could not have asked for better. I decided I have way too many reasons to live. I have nine grandkids that I want to see grow older. You live through it, and you do what you have to do.”
May is Ocular Melanoma Awareness Month, a time to educate people about the dangers, diagnosis and treatments for eye cancer.