5 Things I Learned After My Pancreatic Cancer Diagnosis

The first thing I did after my GI called to tell me I had a tumor on my pancreas; I turned to Dr. Google.

During the call, my doctor mentioned the possibility of a neuroendocrine tumor, so I started there. But my searches quickly led me to something far more alarming: adenocarcinoma, the more common and more deadly form of pancreatic cancer. 

At the time, my GI never actually said the word cancer. It took me a few days to accept what we were really talking about. 

I soon fired Dr. Google and turned to medical journals. Being in the healthcare field helped me navigate those resources, but what I found was sobering. The five-year survival rate was 5%. That number has improved a little since then, but the message stuck: early detection is everything. 

1. Early Detection Doesn’t Guarantee a Cure, But It Matters 

There are two major types of pancreatic cancer: pancreatic ductal  adenocarcinoma (PDAC) (which accounts for about 90% of cases)  and neuroendocrine tumors. PDAC is far more aggressive.  Unfortunately, symptoms are often vague early on and get brushed off  as anxiety, GI issues, or stress-related discomfort. (I’ll speak more on  that kind of medical gaslighting in another blog.)

Many patients aren’t diagnosed until the cancer has already spread. At  that point, surgery is usually off the table. Treatment may include  chemotherapy, radiation, or targeted therapies, with the hope that the  tumor shrinks enough to make surgery possible. In some cases,  palliative care is also introduced to manage symptoms and improve  quality of life. 

Even with early detection and surgery, PDAC often comes back. But  catching it early gives you a fighting chance, and sometimes, that’s  enough. 

2. You Have to Be Your Own Advocate 

I learned quickly that being a patient, even with a medical background,  meant stepping into a whole new world of unfamiliar language and  overwhelming decisions. 

I started bringing written questions to every appointment. I focused on  my priorities, especially around quality of life. I needed to know all my  options, surgery, chemotherapy, alternative therapies, before I could  make choices that felt right for me. 

Eventually, my diagnosis was confirmed after a Whipple procedure (pancreaticoduodenectomy), which removed the head of my pancreas,  part of my small intestine, gallbladder, part of the bile duct, and nearby  lymph nodes. My GI system was rebuilt. Nothing about that surgery or  its aftermath was simple. 

3. Recovery Is Not What They Tell You 

My surgeon told me I’d be back to normal in a few months. 

That never happened.

My digestive system was slow to recover. I now require multiple enzyme  capsules every time I eat. My food choices are limited, and I still live  with chronic, uncontrolled diarrhea despite trying just about every  treatment available. 

“No one warned me how hard survivorship would be.”
– Dr. Yvette Colón

4. Support Systems Aren’t Optional 

I didn’t find comfort in traditional support groups, but I did connect with a  survivorship program at the cancer center. It included art and music  therapy, exercise classes, and other resources that helped me cope. 

I never met another pancreatic cancer survivor during that time. That  was hard. I felt like a unicorn. But I did find strength in connecting with  survivors of other cancers. They reminded me that we’re all navigating  our own version of this road and no one gets through it alone. 

5. You Can Find Hope Even When It  Doesn’t Make Sense 

Pancreatic cancer is still one of the deadliest diagnoses. The five-year  survival rate is around 13%. That’s the reality. 

But accepting that fact isn’t defeatist, it’s freeing. 

It gave me the space to say, “That’s the statistic, not my story.” It helped  me take risks, prioritize my well-being, and learn how to just be. 

Some days, that means fighting. Other days, it means resting. But every  day, it means choosing hope, even in the face of uncertainty.

If you’re preparing for your own medical journey, you may find my blog on 8 Practical Tips for Your First Oncology Appointment helpful. You can read it here. This blog post also includes a free downloadable checklist you can use to prepare.

8 Practical Tips for Your First Oncology Appointment