BRCA mutations. It’s a phrase often linked to breast cancer, but what most patients don’t know is that the gene can also increase their risk of developing pancreatic cancer. According to a 2021 article published in the National Library of Medicine, inherited BRCA mutations significantly increase one’s risk of developing the disease. With very few early detection methods available for patients, knowing your risk can give you a greater chance at survival. One of Project Purple’s ambassadors, Amy Moy, advocates for the use of genetic testing, especially for those who have lost a loved one to pancreatic cancer. She has worked with Project Purple for about five years, and has raised over $13,000 for the organization.
Knowing Your Risk
Moy is no stranger to pancreatic cancer. She states that her family called it an “awful coincidence” that her grandfather, great aunt and uncle on her dad’s side, as well as her mother’s aunt and uncle all lost their lives to the disease. Moy grew up knowing that one day she might develop the disease, but it wasn’t until later on in life that she realized just how big a threat to one’s health it can be. She also didn’t know that 3-10% of patients have a close relative who has also been diagnosed with pancreatic cancer.
It wasn’t until her senior year in high school that Moy realized just how serious being in this position was.
“My best friend’s dad passed away from pancreatic cancer,” Moy described. “I watched this man with the biggest laugh and even bigger heart leave us much too soon. And, it happened way too fast. It hit me: This is real. This is bad.”
The risk is very real. According to an article published in the American Society of Clinical Oncology Educational Book (ASCO), 10-20% of pancreatic cancer cases are thought to be linked to heredity. The BRCA-1 and BRCA-2 mutations specifically contribute to that statistic. Both mutations have been found to increase a person’s risk of pancreatic cancer. The BRCA genes are tumor suppressor genes, meaning that when they mutate, they can no longer protect against unregulated cell growth, which often leads to cancer. However, the BRCA-2 mutations are more closely linked to an increased risk of developing pancreatic cancer, though BRCA-1 mutations also carry a risk.
Soon after graduating college, Moy decided it was time to get serious about assessing her risk. Her aunt talked to her about the BRCA gene mutation and testing for it. However, Moy’s only knowledge of the gene came from Angelina Jolie’s double mastectomy and her positive BRCA gene mutation test that made headlines. But, when her aunt explained that Jolie’s gene mutation also made it 3-8 times more likely for her to develop pancreatic cancer, Moy began to seek out genetic testing to see if she also carried the mutation.
“I was 25 and starting to think about whether I’d want to get pregnant someday,” said Moy. “ My doctor saw my family history of pancreatic cancer and breast cancer and had some concerns. If a mass was found, I would likely lose the ability to have a child naturally– either from a hysterectomy or the side effects of chemotherapy.”
Knowing the risk, Moy decided to go get tested for the BRCA gene mutation, despite her worries.
“I was scared to know my risk, but I also wanted to take every precaution I could,” Moy continued.
Early Detection Testing Barriers
Moy was one of the few lucky candidates who are able to receive early detection testing. However, there are many barriers to receiving these preventive screenings, which may cause problems for those who seek these tests.
“The only way to detect pancreatic cancer early enough to treat it with an operation – the only “cure” today– is through frequent MRIs, ultrasounds, endoscopies, and colonoscopies,” Moy stated, “These are expensive without insurance coverage, and insurance rarely covers them if you aren’t ‘high risk.’”
Thankfully, Moy was considered in the “high risk” category, due to her BRCA gene mutation. According to the ASCO article, the 2019 National Comprehensive Cancer Network (NCCN) Guidelines recommended genetic testing to all patients diagnosed with pancreatic cancer. If the patient has the BRCA gene mutation, it is recommended that close family members such as children or siblings also get tested for the mutation. However, if patients or loved ones do not test positive for the mutation, they become ineligible for early detection testing because they do not have the ‘high risk’ status required by insurance or medical professionals. Therefore, many individuals at risk may not have as much access to detection methods the way Moy did. However, many scientists and institutes are pushing for change in this area.
And, even if a patient does manage to get access to preventive screenings, like all medical procedures, these tests take time that many may not be able to afford.
“All of these tests mean taking time off of work– especially endoscopic ultrasounds or colonoscopies that require anesthesia,” said Moy. “I’m very fortunate to have always had incredible managers and teams who never question me missing a few hours or a day, but it is still pretty awkward.
Moy has also faced emotional challenges with her screenings, such as suffering from claustrophobia. However, she thinks that the testing is worth the discomfort. Moy was quick to point out that these preventative treatments are better than the alternative– going through chemotherapy treatment for pancreatic cancer.
The Future of Early Detection Methods
Moy’s self-advocacy has led her to be a part of the PRECEDE Consortium, an international group that hopes to improve survival for pancreatic cancer. The goal of the organization, according to Moy, is to “transform the early detection and prevention of pancreatic cancer by creating the largest high-risk patient group for specimen collection and health tracking.” Moy decided to be a part of the patient group based on a recommendation from her oncologist.
“Every year, I meet with Dr. Simeone, Principal Investigator and Executive Committee Chair for PRECEDE, and provide blood or other samples and she shares updates on the research and any new studies,” said Moy.
Annual screenings and the PRECEDE study have helped to ensure that many people feel more at ease about their risk due to their BRCA gene mutations. Moy herself has found that this program has made her feel better about her risk.
“I feel relatively ‘safe’ with all of my annual screenings,” said Moy. “I know how lucky I am that science has gotten us this far and that I am in a much safer health situation because of it.”
Project Purple is the founding sponsor of the PRECEDE study. Our original grant of $1.25 million helped jumpstart the study in hopes of saving the lives of more patients diagnosed with pancreatic cancer.
Early detection is the key to increasing a patient’s longevity. Project Purple is committed to helping increase the survivability of this disease, which is why we place a major focus on funding research that searches for methods of early detection.
If you’d like to contribute to our mission of improving survival rates of pancreatic cancer while providing financial aid for patients, consider a donation to our Purple 360 Campaign.
