At the Table: Looking Back at the Last 10 Years

Let’s Win turned 10 in May.

A lot has changed since we launched in 2016. Newer treatments such as NALIRIFOX and stereotactic body radiation therapy are now offered. Genetic testing has now become standard of care, to help patients with certain mutations access the best treatments for them. Molecular profiling is on the rise, as identifying tumor mutations becomes important for both clinical trials and treatments.  

The survival rate has increased from 8 percent to 13 percent but that is still very low. And the number of people diagnosed each year is on the rise, from 53,000 in 2016 to just over 67,000 in 2025. Pancreatic cancer is still on track to becoming the second leading cause of cancer death before 2030.

But hope is in the air, as new treatments focused on the KRAS mutation, the driver of pancreatic cancer, are nearing approval.

We asked our Patient Advisory Board members about the changes they have seen since their diagnoses. Their answers covered a wide spectrum from treatment changes and screening and earlier diagnosis protocols to changing approaches to care. And of course, thanks to Let’s Win and others, better information.

What are the treatment changes you have seen?

Kim Vernick: In the past 10 years, I have seen so much promising research, new treatments, new drugs and new breakthroughs. These changes are happening more recently and rapidly with all the new research. Early detection is also a key factor. The statistics for survival rates are still not high but with all these new breakthroughs survival and maintenance are more promising.

Rob Weker: Survival rates have doubled but still remain at a depressing 13 percent. 

William Ramshaw: After decades of status quo, I have been encouraged to see some progress in both the early diagnosis and treatment of pancreatic cancer. Innovative immune therapy treatments are slowly emerging.

Steven Merlin: What I have seen in the last 10 years is the growth of precision medicine, targeted therapy and specialized testing such as single cell RNA sequencing and chemosensitivity testing on organoids.

Dr. Ira Sharp: There have been some changes in treatment, such as the use of neoadjuvant chemotherapy to shrink the tumor before surgery, stronger drug cocktails like NALIRIFOX and FOLFIRINOX, and treatments targeted to specific mutations, for example PARP inhibitors for BRCA carriers. Another breakthrough is minimally invasive surgery, at least for some patients.

Martin Hynes: I agree that surgery has improved. Within the last decade, survival from the Whipple procedure has increased significantly, especially in high volume medical centers.

Marisa Harris: Not only has surgery improved but pre- and post-operative care has gotten better. But most of these advances have occurred only in the last few year.

Not all the changes have occurred for pancreatic adenocarcinoma—there are better treatments and more options for PNET patients.  

Burt Rosen: There have been huge advancements in treating and understanding more about PNETs and NETs in general. Since being diagnosed about four years ago, we have seen relatively new treatments like PRRT (radiation, approved in 2017) for NETs become available and help a lot of people.

How has screening made a difference?

Andy Lyons: My family has an extensive history of pancreatic cancer—grandmother, great aunts, my mother and her siblings, and finally my brother. After he passed away in 1998 I joined a study that involved annual ultrasound endoscopies to keep an eye on my pancreas and to collect tissue samples. Looking back 10 years, I was nearly 15 years into this study and still the samples were studied only by my physician and his research staff. Data was not being shared and compared with other research centers for some reason. That rapidly changed and now researchers around the world know me. Well, at least my samples.

And at that time, pancreatic cancer was tucked away nearly out of sight and not anywhere near the top on the list of cancers. Along the way, my cancer was discovered when it was just starting and was removed with minimally invasive surgery. And after 12 rounds of preventative chemo, I was declared cancer-free five years ago, a testament that early detection does save lives.

Marisa Harris: Another area that is getting better understood is recognition of the association between pancreatic cancer and certain diseases, such as diabetes or pancreatitis. Newly diagnosed diabetes is now being recognized as a symptom of pancreatic cancer.

Has early detection Improved?

Martin Hynes notes that early diagnosis has remained difficult due to a lack of well-established diagnostic test. Adds William Ramshaw, “Sadly, we are still yards away from a first down.”

Dr. Ira Sharp: But, there is a lot of work on multi-cancer early detection blood tests. Additionally, doctors are starting to use AI tools to scan medical images. This helps them catch tiny changes in the pancreas much sooner than the human eye can see.

What are the changes to care you have seen or experienced?

Marisa Harris: The patient–doctor relationship has changed from a model where the doctor knows best, and the patient complies, to shared decision making. This change has increased patient and family satisfaction. Overall communications have been emphasized, with communication skill training and patient–clinician guidelines introduced at ASCO in 2025. However, use of this training and these skills is uneven.

Coordination between health professionals—palliative care, dietitians, exercise specialists, stress management professionals, spiritual counselors, social workers, and advocates—has gotten better but there’s much more to be done.

Burt Rosen: For patients with PNETs or NETs, there is more support and more involvement of patients in organizations that are focused on NETs—both patient-based groups and organizations that focus on clinicians and researchers.

Martin Hynes: It’s actually difficult to determine the number of patients receiving support from external organizations, it’s assumed to be somewhere in the neighborhood of approximately 25 percent.

Marisa Harris agrees that there has been improved recognition and delivery of emotional support, for all stages of treatment. There is also an increase in support for caregivers, recognizing that they are primary in taking on responsibilities concerning the patient’s care, a stressful and exhausting role.

What is the impact of better information?

Marisa Harris: There has been visible improvement and radical change in patients’ and caregivers’ knowledge about the disease and the journey, thanks to specific platforms like Let’s Win.

William Ramshaw: Back in 2013 (three years before Let’s Win was founded), after turning yellow, I got told I had stage IIb pancreatic cancer. Good information about this hideous disease was harder to find than a vegan in a steakhouse.

John Sanders: Since my own diagnosis, I have seen an increase in pancreatic cancer across the board for a lot of us but especially for African Americans. In some cases it has been mentioned as missed diagnosis, but for others it has been due to a lack of resources. Whatever the case, I believe people are becoming more conscious and comfortable with talking about pancreatic cancer awareness, prevention, and treatment. Research is ongoing and making great strides.

Angella Dixon-Watson: Fear was dominant 10 years ago.My surgeon, who did my Whipple, specifically told me immediately after giving me the bad news: “Do not do Google searches because the information is discouraging.” Due to the spirit of fear, I did not do any searches during seven and a half months of treatment. But over the last 10 years positive verifiable survival stories have been showcased which spread hope. And information on different/successful treatment protocols is readily available on the web. In addition, it is easier to locate clinical trials and specific doctors knowledgeable about pancreatic cancer, to aid the newly diagnosed navigate around their new health reality. As a result, there is more hope in surviving this disease.

Rob Weker: I see a less positive picture. While patients and caregivers are more knowledgeable than ever, very many are still unable to make truly informed decisions in their care.  Promising tools and treatments have evolved over the last ten years, but timely patient access to these remains more dream than reality. Still, despite all the challenges, patient hope and optimism is in a much better place now than 10 years ago and that should be celebrated. 

Dave Price (caregiver for his brother): I am grateful for the last 10 years, even though my brother passed away.  While he was in treatment, the great Dr. Robert Vonderheide at Penn Medicine told my brother, “You just keep extending your hand to the next vine to grab onto and we will be the ones working on making sure that vine is there for you.”  For my brother, six months turned into a year, which turned into two, then three, and eventually almost five. Without those efforts and the incredible care we experienced during that period, we would have never been given the gift of time that we were.

Brooke Dwars: While we’ve only been on this journey for a little over five years for Ryan, I believe the last 10 years have provided a renewed HOPE! While still limited on funding, research has continued to push boundaries in ways I think we all hoped for but weren’t sure would ever come to fruition. The strides made in just five short years have been life changing for us personally and it’s incredible to think what could be coming in the next 10 years!