The Survivor Council is a group of volunteers created to ensure the survivors’ voice, experience and expertise are integrated into the Pancreatic Cancer Action Network’s programs and initiatives.
Anne Shimabukuro of Potomac, MD, was diagnosed with stage I pancreatic cancer in 2005. As an otherwise healthy 37-year-old, she was shocked at the diagnosis. But she was also fortunate to have caught it early, when abdominal pain, back pain and nausea prompted her to seek medical attention.
After surgery which removed a third of her pancreas, Anne continued her treatment with chemotherapy and radiation, followed by more chemotherapy. Throughout treatment, she continued working full time as vice president of treasury at Marriott International, while taking care of her young family.
Her oncologist referred her to the Pancreatic Cancer Action Network’s (PanCAN) website. In 2009, when PanCAN’s National Capital Area Affiliate began planning the first PurpleStride Washington, D.C., Anne began her active involvement as a PanCAN volunteer. Over the years, Anne has served as the emcee for PurpleLight and participated in National Pancreatic Cancer Advocacy Day. She even swam 1-mile in the Chesapeake Bay for PurpleSwim – twice!
Today she continues to help organize PurpleStride Washington, D.C. and represent the affiliate as its media spokesperson. Anne currently works as vice president of finance for PM Hotel Group.
Diane’s battle with pancreatic cancer began in 2002 at, of all places, the Alamo. After all, the Alamo is “a symbol of heroic struggle against impossible odds.” It was during that visit to San Antonio that she began to feel terrible pain in her stomach, or perhaps it was in her back, she couldn’t tell. Needless to say, “remember the Alamo,” has its own meaning for her.
Fortunately, the cancer was in just the right place to produce warning signs that sent her with haste to see her nurse practitioner, Judy. After having a few tests, she was scheduled for a CT scan. The news was devastating – she was in shock. Judy told Diane that it wasn’t a death sentence, and Diane hung onto those words over the next 27 months as she and her devoted husband made their way through the jungle of tests, treatments and new terms – terms such as: needle biopsy, CA19-9, adenocarcinoma, unresectable, 5FU, palliative care.
Diane says that despite the pain and worry, the cancer brought with it many blessings. She now lives day to day with gratitude. Having always been a planner and looking far ahead, she often overlooked the present. Cancer took care of that. After diagnosis, her planning horizon was shortened to 3-month increments, from CT scan to CT scan. Sometimes the cancer grew, but when a scan showed that the cancer had not grown much or at all, Diane would feel that she could safely make plans for the next 3 months – until her next CT scan.
Twenty-seven months after she began treatment, she had a PET scan. When she arrived for her chemotherapy appointment later that day, the nurse told her that she would not be having chemotherapy – the cancer was gone! That was a life-changing moment for Diane.
Diane praises God for seeing her through each step of the way, and for guiding her as she moves through life and helps others who have been struck by pancreatic cancer. In 2008, she saw a newspaper article about a meeting for people interested in starting a PanCAN affiliate. Of course, she was compelled to go! She is a founding member of the PanCAN Boise Affiliate of volunteers and has served in various volunteer chair roles related to outreach. She is currently the Mission Chair and has also helped plan all 10 PurpleStride Boise events.
She feels blessed with a meaningful and rewarding career, serving as professor of finance and associate dean for the College of Business and Economics at Boise State University for 32 years and counting. And, she feels blessed by the many dear friends and volunteers she met through PanCAN, who are dedicated to raising awareness and beating the beast we call pancreatic cancer.
John is a six-year pancreatic cancer survivor who has been married to his wife Cindy for 48 years. He is retired and lives in Cumberland, R.I. They have two children and four grandchildren.
The diagnosis came as quite a shock but John, the whole family, and many friends were positive that he could beat this tough cancer… and he did.
After having some fatigue and abdominal discomfort in early 2015, John’s doctor ordered bloodwork and a sonogram and while waiting for the results, his family noticed yellowing of the eyes. He went for a CT scan, which showed a spot on his pancreas. Two weeks later he was undergoing the Whipple Surgery. Chemo followed, and then radiation. Luckily, all went well and John tolerated the unpleasantness, as many have. It’s six years now, and, “Thank God, I feel great,” he said.
John formed “Team WALMSLEY” for PurpleStride Rhode Island, held each year in Warwick, R.I., and he continues to participate and raise money for PanCAN. “They were a great source of help and comfort during those early months of uncertainty and anxiety,” John said. “Thank you, PanCAN!”
John is a musician who plays guitar and piano and sings at many local establishments. In addition, he has been an active member of the music ministry at his church for over 30 years.
He has a great interest in flying and acquired his private pilot certificate in 1975. Although he is no longer actively flying, he goes up any chance he gets and enjoys every minute.
John and Cindy love to travel, hike and ski but mostly they enjoy being together with family and friends.
“POSITIVITY!” John said. “That is the key.”
Will never stop.
Lisa Beckendorf is a 23-year pancreatic cancer survivor. She was diagnosed by accident – her tumor was found during another surgery. Twenty-three years ago, there was little information available on the disease or treatment options. Her local surgeon and oncologist were not familiar with pancreatic cancer and Lisa was sent from her home in Minneapolis to the Mayo Clinic for follow-up and surgery. After five years of observation by the Mayo Clinic, Lisa was told she had ‘graduated from oncology and to go live her life.’
In 2012, her life changed for the better, as she describes it, at a pancreatic cancer symposium hosted by the Mayo Clinic. It was there that Lisa discovered PanCAN and was inspired to get involved by then-Minnesota Affiliate Chair Brenda Coleman, who also had pancreatic cancer.
Since then, Lisa has served as Minnesota’s PurpleRideStride Chair and Affiliate Chair. She remains active in the affiliate, reaching PurpleStride Grand Club status in 2019 and 2020 for raising more than $1,000 for PurpleRideStride.
The more Lisa got involved with PanCAN and learned about the disease, the more she realized how lucky she was – and notes the increase in survival since she first became a part of her “purple PanCAN family” as a particular highlight.
Lisa became a member of PanCAN’s Survivor Council because she is committed to doing all that she can to make sure that there will be more long-term survivors, just like her. She’s interested in advancing research and is particularly excited about PanCAN’s Precision PromiseTM clinical trials platform. Lisa looks at precision medicine as the future of oncology and is proud to see PanCAN at the “forefront of such an aggressive and hopeful initiative.”
Lisa’s commitment to patients extends to the wider community, as well. In addition to her Survivor Council position, Lisa serves as a patient advocate on several cooperative research group committees, as well as a National Cancer Institute Steering Committee. She’s also a consultant, working with Research Advocacy Network to provide education and resources to patient research advocates.
Lisa lives with her husband, Frank, and their dog, Larry, in the Minneapolis area and enjoys being outdoors – especially when she’s biking and gardening.
Nick is married to the love of his life, Jennifer. They have a son (Nicholas), daughter (Samantha) and two dogs (Jersey and Penny). Nick is a long-distance runner who enjoys running marathons, half marathons and has completed an Ironman 70.3.
Nothing prepared Nick for the news he would receive when he ended up in the emergency room on March 7, 2017. Nick went to the hospital because he couldn’t eat, had extreme back pain and simply couldn’t wait for his upcoming gastrointestinal (GI) appointment.
The hospital completed several tests in a few hours. When the doctors came in to see Nick, they explained he had a mass on the head of his pancreas that required further study. Nick received an MRI the next day with a rush order on the results. He met with multiple pancreatic specialists and they all agreed with the diagnosis: Stage III inoperable pancreatic cancer (adenocarcinoma).
Nick began his first line of treatment, which was chemotherapy. After just three sessions, a CT scan showed the tumor was shrinking. But Nick’s body had a difficult time recovering from the chemotherapy, so his doctors limited his chemotherapy to six sessions. Nick then began five weeks of radiation with a low dose chemotherapy each Monday. After radiation, a new CT scan showed that the tumor had shrunk further and pulled away from the superior mesenertic artery and vein.
In October of 2017, Nick underwent a 10-hour pylorus preserving Whipple procedure. The procedure was a complete success and scans no longer showed any evidence of disease. Nick was released from the hospital just five days after surgery, and he was determined to go home and heal. Thirteen days later, Nick was the survivor speaker at the PurpleStride Philadelphia event.
Nick joined the Philadelphia PanCAN Affiliate in 2018 and is currently the sponsorship chair. For Nick, being an Affiliate member is an honor and a privilege. He attended his first National Pancreatic Cancer Advocacy Day in June of 2018 and will continue to advocate every year until the outcomes for pancreatic cancer patients are radically different. Nick has lost two cousins to pancreatic cancer and his uncle is on hospice care with stage IV pancreatic cancer. It has been difficult to watch family members and friends die from pancreatic cancer, but Nick carries their memories with him each day as a reminder that we must do more.
In 2016, a small growth was found at the head of Randi C. Ervin’s pancreas. She went in for an ultrasound, followed by an MRI, then a CT scan and finally a biopsy. The results weren’t conclusive in terms of the tumor being malignant or benign, but it was clear that it needed to be removed. So in September of that year, Randi went in for a Whipple procedure. During the procedure it was confirmed that she had pancreatic neuroendocrine cancer. It had spread, and ultimately her pancreas, spleen, gallbladder and part of the intestine were removed.
None of this was expected but Randi received amazing care in Oakland, Calif., and continues to benefit from the never-ending support from her family, friends and care team. Her cancer is well-managed for now.
But Randi felt the need to do a little more and to try to pay it forward. Earlier on in her journey, she was thrilled when she ran into a PanCAN booth at a local fair for cancer patients. There she met Krystal, a lead volunteer with PanCAN’s San Francisco Affiliate. They exchanged information and about a year later, in 2019, she joined the Affiliate as the Outreach Chair. She continues to serve PanCAN in that role.
Randi still lives in Oakland and currently works in marketing at a tech company. She loves all that the Bay Area and life have to offer, from functions and fun to drinking and dining. And when she is at home, she enjoys reading DC Comics, tending to her houseplants and watching reality TV.
Ray’s story with pancreatic cancer started back in 1997 when he had his gallbladder removed. A year later Ray was having gallbladder “attack” type pain and his gastroenterologist ordered an ERCP. He found a “mucus plug,” which Ray later found out meant a tumor type mass. It was benign. Officially diagnosed as pancreatitis.
Ray had an ERCP every six months until his last one in November 2012. Each time the mass had not grown or changed shape and was still benign. However, in mid-February 2013, Ray became jaundiced and had back pain. Ray’s gastroenterologist admitted him, did some tests, and came to talk to Ray in his hospital room to tell Ray he suspected it was pancreatic cancer and that it would need to come out.
Ray’s doctor referred him to another doctor, who confirmed the diagnosis of pancreatic cancer. They scheduled the necessary test and finally surgery. On March 22, 2013, Ray had a total pancreatectomy that removed his pancreas, spleen, duodenum, and some ducts and blood vessels.
Following two weeks in the hospital Ray had six months of chemotherapy and then five and a half weeks of daily radiation with his final radiation treatment on December 23, 2013. A fantastic Christmas gift.
Despite being insulin dependent, Ray has been cancer-free since his surgery.
From their Port Washington, Wis., home, Ray and his wife, Brenda, have been active with PanCAN’s Milwaukee Affiliate since they attended the PurpleLight event in November 2015. Ray remembers Brenda saying to him that there were so few survivors unlike many other cancers, so it was important for them to be involved. Together they have participated in their local PurpleStride and the past two years they have organized PurpleLight as co-chairs. Ray and Brenda attend affiliate meetings and assist the affiliate with other activities and fundraising.
The Shupes enjoy their cottage in northern Wisconsin with their three grown children and their spouses, and three grandchildren. Ray is involved with a nonprofit ecumenical youth ministry in Port Washington/Saukville, and for the last four years he has served as the Board President of the group.
Further, they love fishing, boating and hunting. Now that they are retiring (Ray since 2013, Brenda soon) they look forward to more traveling around the United States.
Sandra lives in Reynoldsburg, Ohio. She has a son, a daughter and four grandsons. She joined the Columbus Police Department in October 1975 and retired in October 1994, and she was part of the first class of women who were allowed to train to work patrol. She had a wonderful career and loved her work, but the six-month training early on was difficult. “I think it prepared me to deal with pancreatic cancer,” Sandra said.
In October of 1994, Sandra was hired by Columbus City Schools to teach Law Enforcement and Criminal Justice to 11th and 12th grade students, and she retired in 2010. As a retirement gift to herself, she bought a CanAm Spyder motorcycle. The first year she rode over 3,600 miles, mostly riding alone.
In June of 2012, Sandra was diagnosed with pancreatic cancer and in July she had the Whipple procedure followed by six months of chemotherapy. In 2014 they found the cancer had metastasized to her liver. Surgery and chemotherapy followed. In November 2018, an ablation was performed on two new spots on her liver. She has had MRI and CT scans every three months after that and reports have shown something around the area of the ablations but doctors are currently unclear about whether it’s cancer.
Sandra is a member of the PanCAN Columbus Affiliate. She learned about the volunteer group when she was seeking a survivor support group – a place to talk to other pancreatic cancer survivors.
“I met Cathy Schwandt (also part of the Survivor Council) at one of our affiliate meetings. Our journeys have been different, but we also have a lot in common. It is important that survivors meet each other. Through my relationship with Cathy I started volunteering at the Survivor Tent at PurpleStride and we’ve formed lots of relationships with each other,” Sandra said.
She said she has especially enjoyed volunteering with Cathy at other survivor events, including local luncheons. “It’s heartwarming – each survivor sharing their journey,” she said. “There are tears and laughter. We’ve talked about doctors, medicines that worked for us, diarrhea and constipation. Most important, we’re able to share our fears, our worries.”
Another special memory of Sandra related to other survivors is attending PanCAN’s Advocacy Day and going to Capitol Hill to meet members of Congress to ask for increased funding for research.
“I like meeting new people and listening to their stories,” Sandra said. “I am honored to have been asked to serve on the Survivor Council and to be a voice for other survivors.”
A prostate cancer survivor with a strong family history of pancreatic and other cancer types, Steve Nelson chose to take a proactive approach to his health. He joined the Cancer of the Pancreas Screening (CAPS) study for high risk individuals in 2009.
The study, funded in part by the Pancreatic Cancer Action Network (PanCAN), revealed troubling spots on his pancreas. Steve was able to monitor these through the CAPS screening protocol at Mayo Clinic. In 2017, scans showed cancer forming.
Taking yet another proactive step, Steve underwent surgery to remove a significant part of his pancreas, which removed the disease just as it was getting started.
For Steve, understanding and managing pancreatic cancer risk is crucial. As a representative of PanCAN’s Minnesota affiliate, Steve has shared his inspirational story with members of Congress, healthcare professionals and innumerable pancreatic cancer patients and their families.
Steve volunteers at PurpleRideStrides and enjoys teaming up with his brother Scott, who’s also a pancreatic cancer survivor and former member of the Survivor Council, to raise awareness and funds. By contributing to research and sharing his experience, Steve aims to improve outcomes for patients and show them and their loved ones that there is reason to hope.
When he’s not doing part-time consulting or volunteering, Steve loves spending time at his Minnesota lake home with his wife and family, including nine grandchildren.
Teona Ducre is a pancreatic cancer survivor, single mother of two (Grant and Sydney) and the executive director of Destroy Pancreatic Cancer (DPC) in Atlanta. A native of El Paso, Texas, Teona moved to the Atlanta metro area in 2013 and now proudly calls its trendy Midtown neighborhood “home.”
Teona was diagnosed with locally advanced adenocarcinoma of the pancreas on April Fool’s Day 2016. Since that day she has become a fierce advocate for improving pancreatic patient outcomes through education and outreach efforts with the Pancreatic Cancer Action Network and now as the executive director of DPC.
Teona is passionate about serving her community as a parent volunteer at her children’s high school. She loves to write, travel and is an avid sports fan. Her favorite teams are the New Orleans Saints, University of North Carolina Tarheels basketball team and her beloved Centennial High School Knights. Teona’s mantra, “cancer can’t steal my joy,” continues to inspire many and helps her remain optimistic as she advocates to end pancreatic cancer.
We honor Survivor Council members who have passed away, and celebrate their leadership, commitment and lasting legacy. We continue to Wage Hope in their memory and on behalf of everyone affected by pancreatic cancer.
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