• Mon. Dec 5th, 2022

Pancreatic cancer survivor Rosalyn B. Fuller on national committee evaluating research applications

By Dan Yount

The Cincinnati Herald

Cincinnatian Rosalyn B. Fuller, a 5-year pancreatic cancer survivor, knows a lot about the impact the disease has on patients and their families. Pancreatic cancer, as well as other forms of cancer, has plagued her family for generations, starting with her mother, who died from it when Fuller was in college.  A year later, a brother died from it. The cancer also cut short the lives of another family member, with three other family members dying of different forms of cancer.

This aggressive disease affects African Americans at a rate that is 67 percent higher than in other racial or ethnic groups, Fuller said. Vocalist Aretha Franklin was a victim of the disease.

According to medical sources, the cancer begins in the organ lying behind the lower part of the stomach (pancreas). The pancreas secretes enzymes that aid digestion and hormones that help regulate the metabolism of sugars. This type of cancer is often detected late, spreads rapidly, and has a poor prognosis. There are no symptoms in the early stages. Later stages are associated with symptoms, but these can be non-specific, such as lack of appetite and weight loss. Treatment may include surgically removing the pancreas, radiation, and chemotherapy. While the disease is rare, with fewer than 200,000 cases per year in the United States, sadly, pancreatic cancer is one of the most deadly types of cancer. Approximately 95% of patients will not survive 5 years past diagnosis. Additionally, patients with pancreatic cancer that cannot be surgically removed or that has spread to other parts of the body are generally given one year or less to live. Because of the poor prognosis of the disease, some people do not undergo intensive treatment once they are diagnosed. However, some types of pancreatic cancer may be treatable..

Following her surgery, which lasted 16 hours, Fuller spent eight days in the hospital and 2 months at home while recovering.

The doctors called me a “miracle woman,” she said.

Fuller recently participated as a consumer reviewer in the Congressionally Directed Medical Programs’ Pancreatic Research Program for the evaluation of research applications submitted to the Department of Defense. She was nominated to participate in the program by the Pancreatic Cancer Action Network’s Cincinnati/Northern Kentucky Affiliate, and, as a voting member along with prominent scientists, helped determine how $15 million of Congressional funds would be spent on pancreatic cancer research.

Consumer reviewers are asked to represent the views of patients by preparing comments on the impact of the research on the issues such as the diagnosis, treatment and quality of life.

Fuller, a retired Director of Guidance and Counseling at Cincinnati Public Schools and Walnut Hills High School, said, “Participation in this process was one of the most humbling yet exhilarating experiences that I’ve contributed to as a survivor in my advocacy experience.”

The PCARP fills important gaps by supporting groundbreaking research, while encouraging out-of-the-box thinking, said Col. Sarah B. Goldman, Director of CDMRP. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs.”

Rosalyn B. Fuller (first row, second from right) is shown with other pancreatic cancer consumer advocates who marched for their cause in Washington, D.C.

Pancreatic cancer impacted her life

“Pancreatic cancer has been a part of my life and has engulfed me since my late teen years,” Fuller said in telling her story about how the disease has impacted her life.

“Imagine, coming home from college for the Christmas break, your father picks you up, and on the drive home he tells you, ‘Your mom is not feeling well, we are going to have to take her to the doctor.’ The next day you find out your mother has pancreatic cancer; they give her approximately six months to live. My home was in a small rural town in Georgia, my college was in Virginia, it was the most terrible year of my life, and I barely made passing grades, going back and forth home. When school was out, I was there by my father’s side and became my mother’s caretaker. At that time in life, I was taught to give my mother, toward the end, morphine shots for pain. My mother died the second week in July. One year and a half later, my oldest brother, who lived in New York, died of pancreatic cancer.

“Life moved forward, life went on,” she continued. “During the spring of 2017, I was scheduled to have cataract surgery. I just had a physical, so I went to my physician to get the necessary papers for the procedure to proceed. He said, ‘I’m going to have your blood work re-ordered.’ That was on Friday afternoon. That following Saturday morning I was ready to go to a luncheon at The Cincinnati Woman’s Club. My telephone rang and it was my doctor. He asked, ‘Which hospital can you get to first, Bethesda North or Good Samaritan? Your blood enzymes look worse than before, I want you to go for a work-up today.’ I immediately went to Good Samaritan. They did a series of tests and a scan and discovered I had a tumor blocking passage of enzymes to my liver. By Wednesday, I was in the hospital, having a stent inserted to unblock the passage and a biopsy. I had pancreatic cancer.

“I had no symptoms, none,” she said. “My choices were an endoscopic removal or a resection with robotic Whipple procedure. (This surgery, though difficult, can end up saving the patient’s life by removing cancer that could spread to nearby areas, according to Mayo Clinic sources.)

I chose the full resection. I felt that based on my family history and medical background that this was the best choice for me. Six members of my close family relatives had died of some form of cancer: 2 pancreatic cancer, 2 breast, 1 lung, and 1 gastric. I had the genetic testing completed, even though for me there was uncertain significance, it was significant for the future of related family members.

“As a result of this, at an Advocacy Day in Washington, I happened to have a meeting with a doctor from the Mayo Clinic, and, because of the uniqueness in the gene I carry, I became involved in the Clinical Trial: Biospecimen Resource for Pancreas Research-Families, along with several of my immediate family members.

“After my surgery, my surgeon said, ‘Lady, you made the right choice,’ for hidden behind the pancreas was another tumor, ready for metastases, that would not have been seen, if I hadn’t made the choice to have the Whipple.   

“I feel I am here for a purpose. I hope to help in some way to find the cure for this terrible disease.

“I have been appointed as a Consumer Reviewer, DOD, Department of Defense, CDMRP, Congressionally Medical Research Program for the 2021-22 year. I am the Advocacy Chairperson of the Cincinnati/Northern Kentucky Chapter of Pancreatic Cancer Action Network.’’

She added her presentations in support of increased research funding required challenging work and reading research papers for preparation.

Fuller said there was not a dedicated pancreatic cancer research program on a national level, and advocacy funding efforts promoted in the pancreatic cancer area resulted in an increase in funding to $15 million from $6 million.

As with her own experience, she said the disease is so challenging to detect, and she did not have any symptoms when it was discovered. Symptoms include back pain, lack of appetite, jaundice, late age onset of diabetes, or nausea. “That is why I am working so hard in this program, so we can develop methods of early detection,’ she added.

A scan in recent weeks showed Fuller has remained cancer free.

The affiliate will sponsor its annual PanCanPurpleStride Cincinnati April 30, 2022, to raise funds for research.