The Benefit of Being Your Own Advocate

“I’m calling with your CT scan results. You have a cystic lesion on your pancreas of 1.7 cm and we recommend follow-up in one year.”

WHAT??!! What would you do if you heard that from your internist’s office? Obey or “no way!”

I am glad I opted to become my own advocate and not take the routine word of my doctor Although he’s a qualified internist, specialties are another matter.

In June 2017 my internist sent me for a CT scan when routine blood work results showed elevated liver enzymes. After receiving that phone call, I immediately said “No way.” Although I was feeling fine and had no symptoms, I decided not to wait. I had the results forwarded to my GI doctor, who suggested an endoscopy with ultrasound to take a closer look. During that procedure and biopsy, it was discovered that I had a 95 percent chance of having a malignant tumor on my pancreas — pancreatic cancer, stage 2A.

Finding the Best Doctors

I researched the best possible scenario and medical/surgical team, ultimately deciding to go from my home in Lake Worth, Florida, to Johns Hopkins in Baltimore, Maryland. My oncologist, Dr. Daniel Laheru, recommended that I have Whipple surgery followed by six months of chemotherapy.

I had robotic Whipple surgery on August 14th at Johns Hopkins with Dr. Christopher Wolfgang (now at NYU Langone) and Dr. Jin He. My recovery was relatively smooth and I soon started my six-month chemo stint. I had Gemzar and Xeloda on a three weeks on and one week off schedule for six months. The chemo was overseen by Dr. Warren Brenner, an oncologist at Boca Raton Regional Hospital (Boca Raton, Florida).

I underwent genetic testing and a KRAS mutation was found but this did not influence my treatment.

Since treatment ended, I have been doing well. I have to take Creon pancreatic enzymes with meals. But I am good. I stay active, and volunteer for the Lustgarten Foundation—I have been the Walk Leader in Boca Raton for the past four years.

Do What Feels Right for Your Health

Here’s the kicker. Because I was my own advocate my disease was caught very early. Imagine if I had listened to my internist and waited the year. You wouldn’t be reading this story! I took it upon myself to control my own health direction. Becoming your own advocate and knowing what would be best for YOU helps you direct your life in your own best interests. Becoming either complacent or relying on others’ opinions and directions may not be the best course of action for your life. Do what your instincts tell you. Don’t be shy about speaking up and taking control of your particular situation.

You’re the most important person to you. Do your due diligence. You know yourself best. Trust your instincts and go with them and when it doesn’t feel right don’t obey, say “no way!”