By Kristen Miller
COKATO, DASSEL, MN - It’s been 44 years since he served in Vietnam, yet Clarence “Gene” Sauers, an 81-year-old Army veteran from rural Dassel, is now fighting a battle for his health.
In March of this year, Sauers was diagnosed with extrahepatic cholangiocarcinoma, or bile duct cancer. His doctor deemed this rare form of cancer to be “as likely as not” related to his exposure to Agent Orange, a herbicide used during Vietnam, in conjunction with ingesting carcinogenic parasites known as liver flukes.
Found in the inland waters of Southeast Asia, this particular parasite associated with bile duct cancer is a known carcinogen, and is linked to eating undercooked or raw fish, a staple in Southeast Asian diet.
Cholangiocarcinoma (bile duct cancer) is considered to be a silent killer, as the signs and symptoms of the disease oftentimes don’t appear until it is in advanced stages, as in Sauers’ case.
For Gene, it began with an emergency appendectomy after his appendix burst. During the operation, the surgeon found tumors at the base of the bile duct, as well as in the pancreas, small intestine, and stomach.
Bile ducts transport bile from the liver and gallbladder to the small intestine, but in Gene’s case, the duct was blocked, resulting in jaundice, itching, and abdominal pain.
During the appendectomy, a stent was implanted, which would alleviate the symptoms, but not provide a cure for the malignant cancer.
Surgery to remove the cancer was also not an option due to the cancer’s progression, explained Sauers’ wife Jean. The choice, rather, was for palliative care, focusing on quality of life for Gene, whose prognosis at the time was three months to a year.
Because this is such a rare disease about 2,000 to 3,000 cases are diagnosed in the US each year, according to the American Cancer Society bile duct cancer is not yet considered by the US Department of Veterans Affairs as being among the “presumptive diseases” associated with Agent Orange exposure making soldiers more susceptible to this particular cancer. Currently, claims are only being recognized on a case-by-case basis.
Agent Orange was a powerful mixture of chemical defoliants used by US military forces during the Vietnam War to eliminate forest cover in order to expose the enemy. Agent Orange has been linked to a number of diseases among veterans, such as prostate cancer, Hodgkin’s disease, and soft tissue sarcoma.
Though bile duct cancer is not currently recognized as being linked to Agent Orange exposure, those affected by it have hopes of changing that. Parkinson’s disease, for example, was recognized in 2010 by the VA as being associated with Agent Orange exposure or other herbicides used during military service in Vietnam.
“Growing up in the military, I have an incredible sense of patriotism,” said Gene’s daughter, Kelly Babekuhl as she spoke to the Cokato American Legion recently.
After her father was diagnosed with cholangiocarcinoma, she began researching this rare form of cancer and found the Cholangiocarcinoma Foundation, dedicated to finding a cure and improving the lives of those affected by the disease. Now, she wants to inform other Vietnam veterans of this disease so they can get checked before it’s too late.
During her research, she also found a great amount of information from Anne Pettiti of Cleveland, OH, who founded the Facebook page and group, Vietnam Vets and Cholangiocarcinoma or Bile Duct Cancer. Petitti started the site in 2010 after her husband, Mario, a Vietnam veteran, died from the disease just one month after diagnosis, and only four months after symptoms first appeared. He was 61.
“Usually, before symptoms start, it’s stage 4,” Petitti said, explaining that the liver flukes change the DNA, with the damage being done 30 to 40 years before symptoms even develop.
After her husband’s death, Pettiti filed a claim with the VA, “not for the money,” she clarified. Instead, Pettiti wanted validation that her husband died after serving his country.
Since this type of cancer is not on the VA’s presumptive diseases list, her claim was denied.
Instead, she would have to prove that her husband’s death was, indeed, related to his service in Vietnam and exposure to liver flukes and Agent Orange. Even after doing so, her claim was denied once again.
Pettiti questioned whether the judge was even reading the claim along with the evidence she provided. It wasn’t until she spoke to the judge in person that her claim was approved after three years of fighting the legal battle.
Though she admits the amount of money she receives from the settlement isn’t worth much “I’d rather have my husband here,” her cause is now to help others. “It’s the only way I can make sense of his death,” she commented.
In addition, Pettiti is generating a list of veterans diagnosed with bile duct cancer in an effort to someday have the disease placed on the list, which would ultimately prevent others from having to go through the same frustrations and legalities she endured. She urges anyone diagnosed with this disease to contact her via e-mail at email@example.com.
Tom McKenna, national service officer based in Fort Snelling, explained diseases become eligible for full compensation when there is 5 percent or greater sustained increase in the exposed population over the general population, along with approval of the secretary of veterans affairs; Or, it is through correlating the disease to a similar condition already on the list, McKenna noted. In Gene’s case, it would likely be correlated to soft tissue sarcoma, since the bile ducts are soft tissue.
For Gene, cholangiocarcinoma would be added to the list of conditions he has endured that are directly related to his service in Vietnam and exposure to Agent Orange, including Ischemic Heart Disease and prostate cancer. As a specialized field expert in Vietnam, Gene remembers seeing the planes fly by, shedding barrels of Agent Orange. “They would spray in the morning . . . in two hours, the taller vegetation would be drooping,” Gene recalled. Within a day, the vegetation no longer had strength to stand, he added.
Despite Gene’s health condition, “He is still a soldier, and soldiers don’t complain,” Babekuhl said of her dad. She talked about how Vietnam veterans fought an “invisible army” in the face of “totally unconventional warfare.”
“Fifty years later, there are still these unknown ramifications,” commented Babekuhl, adding “You think you know all the issues that came from the war. It’s like the war really never ended,” She urges veterans to get an Agent Orange examination through the VA. The Agent Orange Registry health exam “alerts veterans to possible long-term health problems that may be related to Agent Orange exposure during their military service. The registry data helps VA understand and respond to these health problems more effectively.”