Six Important Points

Russell Reed

Because of a family history of lung cancer and heart disease, I was surprised by my pancreatic cancer diagnosis.

Having lost my father-in-law to pancreatic cancer in 2008, my wife and I knew a little about what we were up against. We quickly contacted Pancreatic Cancer Action Network (PanCAN), researched on our own, and juggled doctors and insurance to find the right person to treat me.

I have learned a lot from this experience and would like to pass it on to others.

Point 1: Schedule Annual Exams and Press for More

Stay on top of your health. Press your physicians and specialists to order scans and tests of your heart, abdomen, upper and lower GI, and lungs. Because I complained of discomfort in my chest, I was able to get the test that ultimately led to the discovery of my pancreatic mass at an earlier stage. Due to my family history, I was diligently looking at my heart, lower GI, and lungs, but did not look at my upper gastrointestinal tract. If you feel any persistent pain in your upper abdomen, schedule an appointment immediately.

Point 2: Do Not Accept NO for an Answer

If you are not a strong advocate for yourself or do not have a strong healthcare advocate on your side, you may have to wait for a diagnosis or be denied critical, life-saving treatment. I am fortunate in an unusual way. Having been through this with my father-in-law in 2008, we were armed with knowledge imparted by PanCAN. My wife and I were ready to fight, and fight we did. You will have to fight as well.

Point 3: Find an Oncology Patient Advocate

The good people at PanCAN know what you are facing, so they are a solid starting point for finding a patient advocate. Most major health insurance providers have advocates as well. Call the customer service number and ask for an oncology patient advocate. This is a critical step with your insurance plan and worth whatever hurdles are necessary. Review your coverage, deductible, and out-of-pocket responsibilities. Reach out often if items such as approvals for chemo are slow to materialize. Again, do not take NO for an answer.

Other logistical points to consider are meeting with your human resources department (if you are still working) to explore long-term disability options. Call Social Security and inquire about disability benefits and be sure to specify your diagnosis of pancreatic cancer—it matters. A pancreatic cancer diagnosis qualifies most patients for approval for disability benefits.

Point 4: Find the Right Cancer Center and Surgeon to Perform your Whipple

Select a center and surgeon who perform many such procedures per year, known as “high volume” centers. Do not hesitate to get a second or third opinion. We were lucky to find the best doctors, surgeons, hospitals, and treatment centers for my case. My wife and I found that PanCAN was a wonderful source of information on finding the right specialists for us.

Point 5: Your Patient Advocate Should Remain with You

Care does not stop after the surgery or after the chemotherapy is complete. Your patient advocate should ensure timely approval of adjuvant chemotherapy after the Whipple, for example, so there is no delay in treatment. The same goes for the quarterly CT scans. There is no time to waste in treating pancreatic cancer.

Point 6: Prepare Yourself for Adjuvant Chemotherapy

Adjuvant chemotherapy was the most difficult part of my journey. I was under the false impression that it would be easier than all treatment and surgery I received previously. I was wrong. Adjust your expectations if your adjuvant treatment doesn’t go exactly as prescribed by your oncologist. My oncologist had to adjust the treatment plan after two infusions.  Let them know often how your body reacts to the prescribed life-saving drugs. You will get through it and when you ring the bell it will all have been worth it.

Russell Reed completed treatment in August 2025. Read his story “Ready to Fight.”