One of the Biggest Tumors They Had Ever Seen

Donna Robinson

• Routine colonoscopy leads to diagnosis
• Chemotherapy significantly shrinks the tumor
• Finding a surgeon that was willing to try to remove the tumor
• Recurrence and second surgery leave me with type 1 diabetes

Funnily enough, I never had any symptoms prior to being diagnosed in July of 2014 with stage IV pancreatic cancer.

I had gone in for a routine colonoscopy. My doctor discovered what appeared to be a small tumor in my intestine and thought it could be removed without much concern. However, the results of an endoscopy indicated otherwise. The doctor sat down with me afterwards and told me that I had one of the biggest tumors they had ever seen.

Inoperable and Incurable

The news was grim. The tumor was inoperable and incurable and I was given roughly three months to live. The doctors at University of Miami Sylvester Comprehensive Cancer Center recommended that I move forward with chemotherapy while they tried to keep me comfortable throughout my remaining months. I was 58 years old and had two children in high school.  Needless to say, I wasn’t ready to go! I would not let this tumor—or my fear of cancer—take me away so soon. I was determined to have the tumor removed . . . I just had to find the right way and the right doctor to do it.

I started off by going through 10 rounds of FOLFIRINOX, which is a combination of four different chemotherapies. The first three were administered all in one day; the fourth was administered at home over the course of 48 hours. I had some side effects, like fatigue, nausea, problems with touching or drinking anything cold, and neuropathy in my fingers and toes. It wasn’t terrible, but just as I started feeling better toward the end of three weeks, the regimen would restart and the side effects would return.

Along with the chemo, I chose to fight my cancer mentally and spiritually. I maintained a positive outlook on my prognosis. I continued to find joy every day.  I chose not to go on the internet to look for statistics and survival rates. I was also doing weekly Reiki with a practitioner. 

A Breakthrough at Last

My body responded well to the chemo and we had a breakthrough after the tenth round: the tumor had shrunk by 70 percent! The doctors said that I was still inoperable because the tumor was wrapped around some vital veins that couldn’t be replaced. But I was convinced that there had to be someone out there that could do it, or at least give it a try.

My husband found a surgeon at Johns Hopkins (in Baltimore) who was willing to operate and we managed to get an appointment with him. However, I ended up canceling it. A new surgeon, Dr. Nipun Merchant, joined the team at Sylvester around that same time and he brought with him a new sense of hope for my prognosis. He agreed to attempt to remove the tumor, but there was no guarantee once he went in that the tumor could be removed. Nonetheless, we were all eager for him to try.

I went under the anesthesia hoping for the best. When I woke up, it seemed that only minutes had gone by. I thought he must not have been able to do the operation. Actually, nine and a half hours had gone by and he had indeed removed the tumor along with the tail of the pancreas, two thirds of my stomach, some intestine, and my spleen. I was finally cancer free!

I did three more months of chemo after the surgery and continued getting regular scans. Two years later my scans showed something on the head of the pancreas.  I underwent a second operation that removed the rest of my pancreas and gallbladder. As a result, I am now a type 1 diabetic, but it doesn’t stop me from doing any of the things I truly enjoy.

Genetic Testing Provided Mental Relief

I underwent genetic testing and ended up having no mutations. While the results had no impact on my prognosis or treatment, they provided me with a sense of relief in that I was able to let my children know that the cancer was not genetic. At the very least they didn’t need to worry about getting cancer through my genes.

Life After Two Surgeries

My “three month” journey started nine years ago and I am still here, playing pickleball, golfing, swimming in my pool, and riding my bike. I had to give up scuba diving, but I can travel and hike. After nine years, the neuropathy in my fingers is gone but my toes and the balls of my feet are still numb.

Overall I am healthy and I feel wonderful most of the time. What I have learned throughout this journey and my advice for others is that you need to find joy every day. Create your reality. Dr. Merchant saved my life and I am making sure I put it to good use!

Watch Donna tell her story in “Find the Joy in Your Life Every Day.”