Pancreatic Cancer Action Network raises awareness about deadly disease
Today — Thursday, Nov. 17 — is World Pancreatic Cancer Awareness Day.
If you didn’t know this, it probably means you have never had to deal with this disease, personally or in your family. And for that, you can be thankful.
The Pancreatic Cancer Action Network tells us that pancreatic cancer is the third leading cause of cancer-related death in the United States, and it has the lowest five-year survival rate of all major cancers at only 8 percent.
Families who have seen the disease up close, know how devastating it is.
“We were all in shock, and trying to understand what the cancer diagnosis really meant,” said Melinda Thach, of Ames, who has become an active volunteer with the Pancreatic Cancer Action Network (PCAN). Thach lost her mother to the disease in 2012. “We knew people who had other cancers and they had time to do something about it. Mom didn’t have that kind of time, but we didn’t know it (when she received the initial news).”
Her mother, Laura Jardon, was 70 years old when she was told the Monday before Thanksgiving that she had pancreatic cancer. She died 13 days later.
Janet Schaeffer of Nevada said her mother, Ellen “Betty” Miller, was 53 years old, one month shy of her 54th birthday, when she died of pancreatic cancer. She also was diagnosed right before Thanksgiving. Her diagnosis came in 1984 and she lived a little over a year from that, passing away on Dec. 3, 1985. “Mom’s surgeon told us from the very moment it was diagnosed … that this type of cancer is the dragon of all cancers and is terminal.”
Her mom hung on for 13 months after the diagnosis, “which is actually pretty long compared to most people (who are diagnosed),” Schaeffer said. She was only 22 when her mother passed away and she battled major depression for two to three years after her mother’s passing.
Luke Spence of Nevada lost his father, Dennis Spence, of pancreatic cancer in 2013. “He had just turned 62,” Luke said, and his father, like Janet’s mother, lived about a year after his diagnosis. “He went through a complicated surgery to remove the tumor and then chemo and radiation after that. About a month or two later, the cancer returned to his lungs, spine and liver.” Luke said his father died about six weeks after the cancer returned.
Symptoms of pancreatic cancer can be vague, Thach said. PCAN points out a few of the main symptoms that one might notice: pain, usually in the back or abdomen; loss of appetite; yellowing of the skin and/or eyes; weight loss; nausea; change in stool; and the recent onset of diabetes. If you aren’t looking for these things, however, the disease, like in Thach’s mother’s case, can come as a complete surprise. Thach said her family was especially shocked at how far the disease had spread before it was found.
“Now that we know the vague symptoms… we can think about several things in the previous years that maybe could have provided a ‘heads up,’ but were attributed to other things,” Thach said.
Thach said she’s thankful that her mom was feeling OK for the first 10 days after her diagnosis. “We had a big Thanksgiving dinner that year with extended family who we didn’t usually see because of the many miles between us… I’m very thankful the weather was good for driving that year.” In fact, at the funeral, Thach said, one person mentioned how great her mother had looked just the week before.
Schaeffer said after her mother’s diagnosis, “We tried to be with her as much as possible, especially when she was in the hospital. We didn’t want her to be alone. My dad stayed by her side through the whole battle. We had to encourage him to go to my sister’s to rest and take a shower or go for a walk, just to have a short break.”
The loss of her mother, Schaeffer said, was huge for each and every member of the family. “Mom was the glue that held the family together.”
Luke said the most difficult thing for him, was “seeing a perfectly healthy person’s body quickly deteriorate over several weeks as the aggressive cancer spread. “He was mentally acute throughout the whole process, up until the last week, and supporting him, as well as my mom, through that time was very emotionally taxing. While we had a year to understand the disease and know what the odds were of survival, no one is ready to see a family member go through such a quick, though relatively painless (in their case), downturn.”
Luke said, like many of us, being faced with the disease caused him to do research. “I remember … finding that there are different forms that are genetic … but the doctors were clear in saying that my father did not have that type,” he said.
Others who have been faced with the disease in their family, find that reaching out to a group that understands is comforting. Thach became part of such a group. “One of my sisters was inspired to do more with (PCAN) right away, and is active with the group in northeast Iowa (where the family is from),” she said. “She encouraged me to get more involved, too.”
This spring, Thach has become a core volunteer in the group for Central Iowa. She is helping raise awareness about the cancer. Reaching out to the newspapers in the area was one of her missions. She’s attended meetings in Des Moines, talking with staff members from the offices of senators Grassley and Ernst. She’s helping go around and get local governments to sign proclamations, as she recently did with the mayor of Ames. She was also present for a proclamation signing with Gov. Terry Branstad for the state.
She’s excited about volunteers, who will decorate a pancreatic cancer awareness tree in Des Moines for the Festival of Trees there, and she helped with a volunteer drive to try to have businesses turn their lights to purple today, in observance of pancreatic cancer awareness. Purple is the color for PCAN awareness activities.
Fellow Ames resident, Jody Gray, shared that she is watching her “Irish” twin brother, who lives in Osceola, struggle with pancreatic cancer right now, and after growing up so close to him, she wonders, “Why him and not me?” She notes the difficulty of watching him lose weight, lose his hair and get tired easily. “And I’m always asking myself in my heart, ‘Why?’”
Gray is thankful to know that organizations like PCAN exist and that people like Thach are working to help. “The PCAN organization is a wonderful outreach,” she said. “They respond very fast to my emails when I have questions. They send me lots of updated emails, and it’s like having a friend to listen to your concerns and that understands.”
Schaeffer said she didn’t know there were organizations like PCAN out there that could help. “It definitely would have been helpful to know that you weren’t going through it alone.”
That’s exactly the reason Thach has become involved. “Pancreatic cancer can make people feel really alone. This group can help raise awareness and information that support is available. No one wants an invitation to this purple family, but most of the volunteers have gotten involved because someone they cared about died from pancreatic cancer. The more people I talk to, the more people tell me they know someone with this or lost someone they loved who had this, but they didn’t know much about it or where to get information.”
Thach said PCAN has a goal of raising awareness, while doubling the survival percentages for pancreatic cancer by 2020. The organization raises money for scientific research, patient services, community outreach and government advocacy. To reach out to the organization, go to www.pancan.org/wagehope or call Patient Central at 877-272-6226.
And as we come into the holiday season this year, Thach offers all of us some good advice. “Enjoy the time you have with your family and friends,” she said. Because you never know what may happen.
Risk factors for pancreatic cancer, as listed by the Pancreatic Cancer Action Network, include:
n Family History: If a person’s mother, father, sibling or child had pancreatic cancer, then that person’s risk for developing the disease increases 2-3 times.
n Diabetes: Pancreatic cancer is more likely to occur in people who have long-standing (over five years) diabetes.
n Pancreatitis: People with chronic pancreatitis have an increased risk of developing pancreatic cancer. The risk of developing pancreatic cancer is even higher in individuals who have hereditary pancreatitis.
n Smoking: Smoking is a significant risk factor and may cause about 20-30 percent of all exocrine pancreatic cancer cases.
n Race: African-Americans and Ashkenazi Jews have a higher incidence of pancreatic cancer.
n Age: The chance of developing pancreatic cancer increases with age. Most people diagnosed with pancreatic cancer are over the age of 60.
n Gender: Slightly more men are diagnosed with pancreatic cancer than women.
n Diet: A diet high in red and processed meats is thought to increase the risk of developing pancreatic cancer. A diet high in fruits and vegetables may decrease the risk.
n Obesity: Obese people have a 20 percent increased risk of developing the disease compared to people of a normal weight.