In 1999, Al Lupiano was diagnosed with acoustic neuroma, a benign brain tumor. It grows on a nerve that runs from the brain to the inner ear. He has already successfully won the battle against his tumor but there are still lingering side effects.
He thought nothing of it until, in 2021, his wife, Michele, was also diagnosed with acoustic neuroma, and his sister, Angela DeCillis, was diagnosed with glioblastoma, an aggressive brain tumor.
To the ordinary eye, this would seem like an unfortunate situation. But for Al, Michele and Angela, it’s very unusual.
What are the chances all three of them would be diagnosed with brain tumors?
Although there have been cases of family members being diagnosed with brain tumors, it’s very rare.
“About five percent of brain tumors may be linked with genetic factors and conditions, “Shaan M. Raza, M.D., an assistant professor of neurosurgery and head and neck surgery at The University of Texas MD Anderson Cancer Center, told SELF. “But a “significant majority” of brain tumors aren’t hereditary.”
Even Al, an environmental scientist, began to question their circumstances. His sister, whose health quickly declined because of her aggressive tumor, began to wonder as well.
“We had talked about it from day one, that there’s something wrong here, and because of my sister’s background in medicine, she had said the same thing: ‘You need to figure this out. You have to find out what’s doing this. You have to find out if it’s something that’s going to affect my kids,’” Al Lupiano, 50, of Jamesburg, New Jersey, told TODAY. “I was highly motivated to keep moving forward.”
And he was even more motivated when Michele’s doctor found this unusual as well.
When Angela’s health declined, Michele decided to get an MRI to check what was going on and whether she needed to prepare, just in case. A week later, they were in her doctor’s office and she mentioned that Al was diagnosed with acoustic neuroma 20 years earlier.
The doctor took pause at the unusual situation.
“(The doctor) just looked at me and said, ‘I’ve been doing this a long time. I don’t know if I have ever had another husband and wife who have an acoustic neuroma. It’s just extremely rare. It’s just like both of you being struck by lightning,’” Al recalled.
And the fact that they’re married makes this even more unusual.
“He said he had never seen in his practice, had never read about it in any books, of two individuals that happened to be married to each other having a primary brain tumor such as ours, an acoustic neuroma, which has an incident rate of one in 100,000. The chance of two of us coming together and having this was too much for him to ignore,” Al remembered.
And then they told him about Angela and her aggressive cancer. Now the doctor wanted to know even more.
“We kept saying, ‘Well, we grew up in the same township,’” Al said. “Other than that, we don’t have any experience to link us together.”
This conversation finally gave Al the push to start asking. He posted on Facebook if there were others who went to the same high school he did, Colonia High School, who were also diagnosed with primary brain tumors and led to other types of cancer.
“Many people chalk these things up to just bad luck. I tend to not see that. I look at coincidences. And when coincidence start adding up, it’s no longer a coincidence. It’s a pattern. And I saw a pattern developing here. And I said I was going to use very basic science to see if it panned out. And the further I dug into this problem, the more I found patterns emerging,” Al explained.
And do you know what he found?
He found more than 100 people in the same situation. They were former teachers, students, and staff at the same school. The number of people affected was so alarming that he was prompted to create a page looking for more people and to get to the root of the matter.
But before he could go forward with this research, Angela’s health declined even more. Three months after her diagnosis, Angela passed away in February 2022.
This pushed Al to move forward with his research.
Unfortunately, he’s very disappointed at how state and federal agencies have handled the situation.
“I’m a little frustrated, because we’re getting a lot of warm wishes, and ‘We’re willing to help’ from state and federal agencies. But as of yet, they’re not willing to get involved,” Al said. “They’re taking more of a wait-and-see approach. And I think the time has come for them to have boots on the ground and actively participate in the sampling of air, water and soil.”
He’s especially concerned because his sister’s children attend the same high school. And he doesn’t want them exposed to whatever they were exposed to if it’s confirmed to be present in the school.
And he is demanding answers and quick action.
“Finding something isn’t the end of the road. Finding something is now the beginning,” Al said. “And if we don’t find something we still have to continue to look to make sure there’s not a hazard present and, if there is, we have to remove it.”
Do you want to learn stories of other people who were in the same situation as Al, Michele, and Angela? Watch the video.
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