Why I Advocate for Pancreatic Cancer Awareness and Funding

By Elise Roth Tedeschi, 2020 Over 40 & Fabulous! Inspiration Award Winner

In 2012, I was diagnosed with stage 4 inoperable pancreatic cancer. My husband Patrick and I were just a few months away from celebrating our 11th wedding anniversary, and our boys were in kindergarten and second grade. I was utterly devastated to think that I would not be there to see my kids grow up or even graduate elementary school. At the time, I had only a 1% chance of surviving the next five years. Numerous doctors told me to get my affairs in order and that I had less than nine months to live. God had another plan.

Once diagnosed, I went through a highly aggressive treatment plan that included chemotherapy, radiation (along with a chemo pump), advanced surgery and additional chemotherapy. I may have gotten down to 89 pounds, but I still felt like me. It was my faith, my family and my friends that got me through it. I didn’t care what I needed to go through to get better; I just knew that I had to live for my boys.

Unfortunately, over 60,000 people will be diagnosed with pancreatic cancer this year, and sadly, 80% of those people will not survive the year. In 2012, the overall survival rate was 5% and now it is 10% due to increased federal funding for research. Researchers are finding that genetic testing and molecular tumor testing are essential in determining a patient’s specific therapy.

Numerous gene mutations are linked to pancreatic cancer risk: BRCA1, BRCA2, PALB2, CDKN2A, ATM, TP53, STK11, MLH1, MSH2, MSH6, PMS2 and EPCAM. If you know you have one of these mutations, or want to be tested to see if you have any of these mutations, reach out to your doctor or see a genetic counselor. Knowledge is power.

In the end, one of the most important things you can do is to pay attention to your body; you will know when something is wrong. I was misdiagnosed for almost nine months. I was in so much pain and finally switched to a new internal medicine doctor who immediately ordered a CT scan with contrast and found a 7-centimeter tumor. He saved my life!

My advice for anyone diagnosed with pancreatic cancer:

• Your first call should be to the Pancreatic Cancer Action Network’s Patient Services.

• Find someone you trust with your life to be your medical advocate. My sister, Cari, researched, planned and helped me through the most challenging time in my life. I put all my energy into spending time with my boys and staying strong.

• If you can, go to a National Cancer Institute (NCI) designated cancer hospital.

• Be positive; your mindset is critical.

• Look into clinical trials.

• Remember, you are a statistic of ONE.

Elise shares her story and the stories of others with state and local legislators to push for better funding for pancreatic cancer research. You can join the fight for more funding and better pancreatic cancer awareness at www.pancan.org