Adenoid cystic carcinoma survivor: Be your own advocate

It took Eileen Brzoska almost eight years to get an accurate adenoid cystic carcinoma diagnosis. “I was misdiagnosed twice due to the rarity of my cancer,” she says.

In 2004, Eileen went to a doctor in Austin, Texas, with a small lesion on her lower left eyelid. It was diagnosed as a “chalazion” (a usually painless, benign bump) and removed surgically.

The bump returned, but Eileen didn’t worry. “I was told that chalazions could recur and that they were harmless,” she says.

A closer inspection

The lesion didn’t interfere with her vision, so for years, Eileen just ignored it. But after the birth of her third child in 2011, the lesion developed its own blood supply, and the vessels were visible when she looked in the mirror.

Eileen returned to the doctor, who performed a biopsy in July. That resulted in a diagnosis of “basal cell carcinoma, with other features.” 

“Those ‘other features’ are what worried me,” Eileen says. “So, at the urging of a friend and the recommendation of my optometrist, I came to MD Anderson.”

Eileen’s adenoid cystic carcinoma treatment

Here, Eileen was diagnosed with adenoid cystic carcinoma, an eyelid cancer so rare that hers was only the ninth documented case in medical literature.

Eileen had surgery to remove the lesion, followed by 25 rounds of proton therapy under Steven Frank, M.D., and a more traditional type of radiation therapy called ortho-voltage under Bill Morrison, M.D.

“I was nervous,” Eileen admits. “There was no danger of losing my eye, but there was a danger of losing my vision. There was also an increased risk for cataract development. But I knew the treatment was necessary, and I was willing to take that risk.”

Adenoid cystic carcinoma treatment side effects

About one-third of Eileen’s lower eyelid was removed during the surgery, and her left eye was stitched shut temporarily to promote healing. A month later she had a procedure to remove the stitches and to correct a condition called ectropion, in which the eyelid curves away from the eyeball. 

“My eye watered continuously for the next month, and it seemed like it would never stop,” Eileen says. “But eventually, it stabilized.”

Eileen also experienced side effects from the proton therapy. “I smelled chlorine very strongly and saw what looked like aurora borealis swirling above my head,” she says. “Both the lights and the smell are from the protons hitting nerves and sending sensory signals to the brain. Apparently, it happens to a lot of people.”

The technicians helped counteract the smell by wiping flavored lip balm under Eileen’s nose. And Eileen eventually drew comfort from the lights, considering it evidence that the treatment was working. 

A bright future

Today, Eileen is considered cancer-free. Her only lingering eyelid cancer side effect is a pinpoint of blue light that she sees occasionally when she blinks. 

“I’m told this is damage to a nerve from radiation treatment,” Eileen says. “But my prescription for glasses has changed only very slightly over the years and is about what someone would expect from natural aging. I’m overjoyed.”

“My prayer from the moment I was diagnosed was to be guided to the best treatment and people to cure whatever I had,” Eileen adds. “At MD Anderson, I landed exactly where I needed to be. I have no doubt that I received the best, most comprehensive care available.” 

A calling to help other cancer patients

Now, Eileen is ready to help other cancer patients. She recently signed up to volunteer through myCancerConnection, MD Anderson’s one-on-one support program for patients and caregivers. She is eager to give hope to patients with adenoid cystic carcinoma and other rare cancers.

“In many ways, rare diseases are special,” she says. “Not having a solution to a problem can be a real motivator for your health care team. And while it might seem hopeless at first, a rare cancer diagnosis can actually spur ingenuity from everyone involved.”

Most of all, Eileen plans to remind patients that they are their own best allies.

“Be an advocate for yourself,” she says. “Make sure everything removed from you surgically is biopsied. And follow up with your health care team. It provides a distinct sense of control at a time when your life may seem overwhelming.”