Remembering the 'Notorious RBG'
- One year ago today, the nation was shocked and saddened by the news that U.S. Supreme Court Justice Ruth Bader Ginsburg had died after a hard-fought battle with metastatic pancreatic cancer. She was 87.
- Since 1999, Ginsburg has fought cancer in her colon, lungs, pancreas and liver.
- Parents, siblings and children of someone with pancreatic cancer are considered at high risk for the disease because they are first-degree relatives of the individual. Screenings should be considered for these people.
Ginsburg was a pioneer; she shattered glass ceiling after glass ceiling. She fought against gender discrimination as a lawyer for a decade before taking a seat behind the bench in the 1980s.
Read MoreRBG's Multiple Cancer Battles and Family Connections
Since 1999, Ginsburg has fought cancer in her colon, lungs, pancreas and liver. Six years into her career as a Supreme Court justice, she was diagnosed with colon cancer; she underwent surgery followed by chemotherapy and radiation treatments. During the process, she didn’t miss a day on the bench.
Ten years would pass before Ginsburg faced cancer again. She was first diagnosed with cancer in her pancreas in 2009. The cancer was resected (surgically removed), but the recurrence rate is still about 60%, Dr. Diane Simeone, a surgical oncologist and director of the Pancreatic Cancer Center at NYU Langone Health’s Perlmutter Cancer Center, tells SurvivorNet.
It wasn't until about 10 years after the resection that cancer showed up in her lungs, which makes Ginsburg's case an interesting one, Simeone says. This is because a subset of pancreatic cancers, which tend to be more biologically favorable, spread selectively to the lungs. These patients tend to be longer term survivors, despite having metastatic disease, and resection of the lung metastases can provide a durable response.
In November 2018, Ginsburg fell inside her office at the Supreme Court and fractured three ribs. She had a CT scan of her ribs after the fall, which revealed cancerous nodules in her lungs. She had the cancer in her lungs removed as well, but in 2020, cancer again showed up in her pancreas.
In August 2019, the Supreme Court announced that RBG had recently completed three weeks of focused radiation treatments for a tumor found in her pancreas; the pancreatic cancer from 2009 had come back. She was cancer-free by January 2020, but the cancer returned a month later in February. (This news wasn't shared with the public.) In May 2020, she was again receiving treatments for recurring cancer. She died of the disease in September 2020. She was the first woman to lie in state at the U.S. Capitol in Washington, D.C.
"I think it highlights the very difficult nature of pancreatic cancer," Dr. Simeone says of Ginsburg's case.
Ginsburg wasn't the only person in her family to battle cancer. Ginsburg's husband, Marty, was diagnosed with testicular cancer during her second year of law school in 1957. He died at 78 from complications of metastatic cancer on June 27, 2010 10 years before his wife. It remains unclear what type of cancer Marty died of.
Her mother, Celia Bader, also struggled with cancer throughout RBG's high school years. Celia died of cervical cancer the day before her daughter's high school graduation.
Detecting Pancreatic Cancer Early is Crucial
Recurrence and the Importance of Early Detection
Ginsburg's cancer recurrences got closer together as she aged; pancreatic cancer incidences increase with age, Simeone says. The five-year survival rate for pancreatic cancer is just 10%, which can prove to be a challenge as people age. (The five-year survival rate means that people who have that cancer are, on average, about 10% as likely as people who don't have that cancer to live for at least five years after their diagnosis.)
The highest long-term survival rates occur in resectable tumors that are 1 centimeter or less in size. Long term survival rates can reach 70%-75% in those cases. But Dr. Simeone says that in most patients with a resectable pancreatic cancer, the tumors are still an average of 2 to 3 centimeters in size. Increased focus on early detection, including improved identification of those at elevated risk, and expanded use of screening, will help move the field to identifying small tumors, she adds.
"That is why increased early detection is so important," Simeone says.
Dr. Anirban Maitra, of MD Anderson Cancer Center in Houston, Texas, tells SurvivorNet that because the pancreas is inside the abdomen, "it often doesn't have symptoms that would tell you that something is wrong with your pancreas … by the time individuals walk into the clinic with symptoms like jaundice, weight loss, back pain or diabetes, it's often very late in the stage of the disease."
The American Cancer Society estimates that about 60,430 people will be diagnosed with this type of cancer in 2021, and about 48,220 people will die from it, which is to Maitra's point that "most people will die from this disease within a few months to a year or so from the diagnosis," he tells SurvivorNet.
"The reason for that is that most individuals, about 80 percent, will actually present with what we called advanced disease (or metastatic), which means that the cancer has either spread beyond the pancreas or into other organs like the liver, and so you cannot take it out with surgeries," he says.
Dr. Allyson Ocean explains why pancreatic cancer is so hard to treat.
Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, tells SurvivorNet that pancreatic cancer is soon to be the second leading cause of cancer death in the U.S.
“Mortality is rising because it’s caught so late,” she says, “and we don’t have enough effective medications against the cancer.”
So, the question in front of oncologists today is: "How can we detect this disease earlier in the process so we can have a better impact on the survival of our patients?" Maitra says.
Screening for Pancreatic Cancer
Parents, siblings and children of someone with pancreatic cancer are considered at high risk for the disease because they are first-degree relatives of the individual. This means that Ginsburg's children are considered high risk for pancreatic cancer and should be screened; a study published in the American Cancer Society Journal found that just 21% of family members considered high risk for pancreatic cancer participated in surveillance.
Last year, the American Gastroenterological Association updated its clinical guidelines for pancreatic cancer screening in high-risk individuals, and at the top of the list of best practices was that screenings should be considered in first-degree relatives of patients with this type of cancer.
"It's important for people to know there is something you can do," Jessica Everett, a genetic counselor at NYU Langone's Perlmutter Cancer Center, tells SurvivorNet. "If you're concerned about pancreatic cancer in your family, start by talking to a genetic counselor to learn more about your risk and what options you have."
Learn more about SurvivorNet's rigorous medical review process.