As told to Jacquelyne Froeber

In 1994, I was in the emergency room when the healthcare provider told me pancreatic cancer was only diagnosed in 65-year-old Black men.

But there I was — a 44-year-old white woman with a mass on my pancreas.

The whole scene felt like a bad dream. Just an hour earlier I was having fun at a party. Then the next thing I knew I was in the ER with severe back pain. I thought it was gallstones — I’d heard that gallstones were very painful.

I’d never heard of pancreatic cancer before.

But I also hadn’t felt like myself for some time. About six months before the ER visit, I went to my healthcare provider for some tests. I was having high chest pains (probably stress), digestive problems (probably my diet), weight loss (but the diet was working!) and I was tired all the time. I was so drained I barely had the energy to play tennis — the sport I loved. But no one called me about my test results and I figured no news was good news.

It turned out my provider had left the practice and never received my test results. There was, in fact, a mass on my pancreas. I had pancreatic cancer.

The diagnosis didn’t feel real. I was relatively young, active and had no family history of cancer. I wanted answers and I wanted to learn everything I could about the disease. But I quickly found out there wasn’t much to learn. I couldn’t find any significant research or education on pancreatic cancer. And zero information about the disease in women.

The worst part was hearing from providers that no one lives with pancreatic cancer. I had to come to terms with the fact that I was going to die.

This was unacceptable to me. I wanted to see my son graduate and get married. I wanted to meet my future grandchildren. I knew I had to do everything I could to live.

My treatment options were limited. Chemotherapy for pancreatic cancer didn’t exist. For me, it was surgery or nothing. I had a Whipple procedure, which removed the tumor in my pancreas and reconstructed my digestive tract. After the surgery, I was diagnosed with mucinous cystadenocarcinoma, a rare, slow-growing cancer. And although we had caught it early, there was a chance it could come back.

I was beyond grateful that the cancer was removed, but no one prepared me for what to expect with a new digestive tract. Certain foods would keep me in the bathroom for hours and some days I couldn’t get out of bed because of the pain and nausea. I felt so alone. There were no dieticians familiar with pancreatic cancer. I didn’t even have an oncologist that specialized in pancreatic cancer. I felt like I was stumbling around in the dark trying to find a light.

The American Cancer Society said that most people don’t live past five years with pancreatic cancer. That fact played on a loop in my head almost every day. I’d wake up in the morning and be thankful to be alive, and then wonder — was today the day? Then, I made it to five years — no evidence of disease. I felt an unfamiliar stirring of hope in my heart. Maybe the small amount of research out there was wrong.

But shortly after the five-year mark, the cancer came back, and it was more aggressive than before. I was devastated.

Again, my only option was surgery, so I had the rest of my pancreas removed along with my spleen and gallbladder. I also had my first CT scan ever after the surgery, and although the technology was impressive, the imaging showed that the cancer had spread to my lymph nodes. I wanted to have another surgery to remove the lymph nodes right away, but my oncologist said they were inoperable.

I spent the next two years talking to different oncologists and finally found one who had been studying pancreatic cancer for years. He helped me start a treatment plan and find a surgeon to remove the lymph nodes.

When I stepped back and looked at all of the time and energy I’d spent on advocating for my health, I realized I needed to do more. Not just for me — but for everyone like me who was desperately searching for information and innovation and hope. I started looking into advocacy training, and I eventually became the first survivor patient research advocate for pancreatic cancer in the U.S.

All of the fundraising, legislative visits and reviewing upcoming pancreatic cancer research and clinical trials helped soften the terrible news that the cancer had come back in 2006. This time it was in my lung.

My healthcare provider wanted to put off any testing because the spot was small, but I insisted on a biopsy. When the results came back, I was right — it was positive for pancreatic cancer. I then had surgery to remove the lower lobe of my lung.

It’s been incredibly tough to go through all these surgeries and still know cancer can show up again any time. But throughout the years I’ve worked with many local, national and international organizations to help advance research and treatment options for pancreatic cancer. I helped the U.S. Department of Defense create the Pancreatic Cancer Research Program — and I still work with them today.

I’m probably most proud to be founder of the first pancreatic cancer support group in Arizona. We started it more than 20 years ago and continue to help people connect with each other and support mental health.

We’ve come a long way in the fight against pancreatic cancer, but there are still many mountains to climb. I think back to my initial diagnosis and being told that pancreatic cancer is a man’s disease. That’s simply not true. Women get pancreatic cancer. And rates are rising for younger people under the age of 50.

If you or someone you know is experiencing symptoms like I did — chest pain, weight loss, changes in your digestive system — talk to your healthcare provider right away. Don’t let anyone tell you that women don’t get pancreatic cancer. I’m living proof that we do.

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