Mario Petitti arrived in the United States with his family from Italy when he was just seven years old.
It was love at first sight.
Making friends quickly in his new home in Cleveland, Ohio, he joyfully immersed himself in the language, sports, and other traditions of his new country.
A decade later, he was proud to serve in the Vietnam War.
Completing basic training at Fort Campbell, Kentucky, Petitti was sent to Vietnam in January 1970 and was stationed at Lane Army Heliport.
As part of the 129th Assault Helicopter Unit, Cobra division, Petitti first worked in supply before being promoted to sergeant. He then worked repairing weapons.
While he saw horrific things in Vietnam, he came home fully intact, with an honorable discharge and no signs of psychological trauma.
A few years after he came home, he met his future wife, Anne.
They were married, had three children, and enjoyed what she describes as a blissfully happy life.
“His entire life revolved around family,” Anne Petitti told Healthline.
But just one month into his early retirement, at age 61, Mario Petitti died of a rare and aggressive type of cancer.
And although decades had passed since his military service, his death was the result of his time in the armed forces.
“We felt like our life was just beginning,” Anne Petitti said. “We were looking forward to spending even more time with each other and our kids.”
Veterans dying from rare cancer
Petitti is one of at least hundreds of Vietnam War veterans who’ve died, or are dying, of bile duct cancer, which is also called cholangiocarcinoma.
The cancer, which is rare in the United States, can be caused by parasitic worms, called liver flukes, that are found in fish in the waters of Vietnam and other Southeast Asian countries.
Humans who eat raw or undercooked fish can acquire the parasite larvae, which mature in the slender tubes (bile ducts) that carry the digestive fluid bile, and can produce carcinogenic irritation.
Thousands of Americans who served in Vietnam could be at risk for this cancer.
But the disease can take decades to manifest, according to scientific experts interviewed by Healthline.
Once the cancer is discovered and diagnosed, the overall duration of survival is less than six months in patients with metastatic disease.
Some, but not many, can survive longer if the cancer is surgically removable.
VA just says no
Vietnam veterans and their family members interviewed by Healthline said the Department of Veterans Affairs (VA) is making it difficult for veterans diagnosed with this disease to get their benefits claims approved.
Most claims have been denied by the agency, including survivor benefit claims for the spouses.
Mario Petitti's claim, which was filed after he died, was denied twice.
“It took three years after Mario died to get approved for our claim,” said Anne Petitti, “but most people are still trying.”
The Associated Press (AP) reported last year that about 700 veterans with bile duct cancer have been seen by the VA in the past 15 years.
But less than half of these veterans submitted a claim for service-related benefits, primarily because they were simply unaware of a possible connection between the cancer and their service in Vietnam.
The VA rejected 80 percent of the requests, the AP reported.
Air Force veteran rejected
Air Force veteran Garry Lobaugh, who’ll be 76 on Christmas Eve, served his country for 22 years, including a total of 12 months in 1965 and 1966 in Thailand during the Vietnam War.
Fifteen months ago, he was diagnosed with bile duct cancer.
Lobaugh provided the VA with letters from two doctors stating that it is as likely as not that his cancer was caused by liver flukes as a result of eating raw or under-cooked fish while he was serving in Thailand.
But the VA apparently was unmoved.
The agency needed more proof from Lobaugh, despite the fact it is common knowledge, multiple experts tell Healthline, that liver flukes were and are in the waters of Thailand.
Lobaugh’s claim was rejected and he’s appealing.
Had the claim been approved, it would have simply provided his wife of 52 years, Lutie Lobaugh, with survivor benefits if he were to die from this cancer.
“We’re losing Vietnam veterans on a daily basis now, and they’re not being told anything by the VA about the connection between this cancer and their service,” said Lobaugh, who’s retired and lives with his wife in Kansas.
Lobaugh is one of the lucky ones.
His doctors were able to remove the tumor, along with a part of his liver and his gall bladder.
He receives CT scans every four months, and currently there is no evidence of cancer.
But it could appear at any time.
“The fact that we have so many veterans and veterans’ widows getting the runaround from the VA just isn’t right,” he said. “My wife deserves assistance after I am gone. This is not about the money, it’s about getting the survivor benefits that we’ve earned for our families.”
VA officials respond
Curt Cashour, a spokesman for the VA, told Healthline that liver flukes “have a maximum life span of 20 years in human hosts. Given the fact that the Vietnam War ended more than 40 years ago, active liver fluke infection is not anticipated in Vietnam veterans.”
But Dr. Paul Brindley, a professor of microbiology, immunology, and tropical medicine at George Washington University, said that is beside the point.
“The science suggests that exposure even for some of those 20 years may have been sufficient for cancer to originate and be there for a number of decades,” he told Healthline.
While in many cases the worms are gone, Brindley added, “That does not exclude the possibility of the linkage to the cancer. The infection could have happened in the past, but that doesn’t mean you do not remain at risk for cancer.”
Brindley said that while the veterans’ battle with the VA to prove causality “is not my bailiwick, science shows that the worm is a well-known risk factor for this cancer. And if the worm dies of old age, the damage could have already been done. The genetic modification happened earlier.”
That, he said, “is the normal course of this cancer.”
Brindley added these parasitic worms can be eliminated from the body if caught early with such prescription medicines as praziquantel.
But it is decades too late for it to stop the cancer for Vietnam’s suffering veterans.
Brindley explained that health authorities in Thailand now treat children in school for this parasite.
He added it is conceivable that someday it could be used as a preventative medicine in the United States for active duty troops, veterans, or others who are at risk for exposure to the parasite.
The parasites infect approximately 25 million people worldwide.
It is most common in Asia, but it’s uncommon in North America.
Response ‘staggering and appalling’
Katrina Eagle is a veterans’ attorney and advocate who’s represented numerous veterans and surviving spouses in their appeals for service-connected benefits related to bile duct cancer.
She told Healthline the way the VA has handled these cases is inexcusable.
“From an advocate’s perspective, it is incredibly frustrating that veterans and their family members and surviving spouses are being forced to educate VA about this fatal cancer,” Eagle said.
“It should be the other way around — especially when the Secretary of VA [David Shulkin] is a physician, and this cancer is and was endemic in Southeast Asia during the Vietnam conflict,” she added.
Eagle called the inconsistency in which VA laws, regulations, and policies are applied to these cases “staggering and appalling.”
“There is no rational excuse or defense for VA’s lack of proactive training for its VA examiners and VA regional office adjudicators,” she said.
Eagle said on any given case, a VA doctor could state that if a veteran served in Vietnam, it was more than likely he was exposed to parasites, while another VA examiner might find no correlation.
“Why are claims not approved uniformly? Everything is done haphazardly, which is not fair to our veterans,” she said.
Data not released to public
Cashour said the infectious disease team at Northport VA Medical Center in New York conducted a small pilot study this spring to detect evidence of exposure to the liver fluke parasite in Vietnam veterans.
The study tried to evaluate a possible link between eating raw/undercooked fish from Vietnam rivers to a rare form of cancer.
Blood samples taken from 50 veterans, Cashour said, were sent to a lab in South Korea.
More than 20 percent of the samples reportedly came back positive or bordering positive for liver fluke antibodies.
But exact numbers will not be revealed until the study has been peer reviewed and accepted for publication in a medical journal, perhaps sometime early next year, according to VA officials.
Anne Petitti believes the agency is not really interested in doing a study large enough to learn just how many veterans are actually getting this cancer.
“If they really wanted to know, they’d make all clinics and hospitals know this is a problem and keep the data accordingly,” said Petitti.
Her Facebook page for veterans and their families, which was started seven years ago, now has almost 300 veterans participating who have been diagnosed with the disease.
Besides the pilot study, Petitti wonders why the VA hasn’t initiated an agency-wide program that enables veterans and their families to join a database, “then be compared to the general population?”
Agent Orange all over again?
Multiple veterans interviewed by Healthline for this story said this situation is chillingly similar to the veterans’ ongoing nightmare dealing with Agent Orange, the toxic herbicide that harmed so many veterans in Vietnam.
For generations, veterans who’ve filed claims related to exposure to the toxic defoliant have been denied.
It’s taken more than 40 years for the VA to acknowledge that multiple cancers and other serious diseases are linked to exposure to Agent Orange.
Many of these diseases are now on the VA’s presumptive list.
But to this day, some veterans are still denied their Agent Orange claims, and have to jump through hoops to get VA to acknowledge they were in fact exposed to the deadly defoliant and have their illness deemed “service connected.”
Congress getting involved
Sen. Chuck Schumer (D-New York) recently wrote a letter to Shulkin urging him to expedite the results of the small VA liver flukes study.
Schumer reportedly said that, because veterans don’t know the study’s results, they “live with the uncertainty around what their risk is for developing this terminal cancer.”
Rep. Tom Suozzi (D-New York) last week asked the chairman of the House Committee on Veterans Affairs to hold a hearing on the links between veterans’ military service, liver fluke infection, and bile duct cancer.
“The ties between a veteran’s service and contracting the disease appear to be more than coincidental,” Suozzi wrote.
Mario Petitti’s legacy
Meanwhile, while Anne Petitti shared a considerable amount of biographical information about her late husband with Healthline, she said it doesn’t capture Mario Petitti’s essence.
“It doesn’t tell you about the twinkle in his beautiful blue-green eyes, as he joked with someone. It doesn’t tell about his hand movements and gestures, as he tried to explain something or emphatically state an emotion. It doesn’t show the tenderness he showed as he took care of his 95-year-old mother,” she said.
And, she concluded, “It doesn’t show how he doted on his wife, and told her she looked beautiful even though she was a mess, or show his excitement when he got to play softball with his children. This is the Mario that should be known, because this is the soul of who Mario was.”