Pancreatic Cancer Survivor

Trials and Testing Offer Hope and Promise

Friday, July 9, 2003 – the day Scott Nelson was diagnosed with Stage IIB pancreatic cancer at 50 years old – is a day he’ll never forget. He relied on top-notch physicians, a successful clinical trial and a broad support system to manage his year-long treatment. Today, Scott is cancer-free, and he’s actively involved in promoting awareness and education about the promising future of treatment for all types of cancer.

I had proactively made an appointment with my doctor, though it was a bit out of character for me. I’d felt queasy for about six weeks. I just didn’t feel right. They found my cholesterol was a little high, but my general practitioner wanted to be proactive, too, and he ordered an ultrasound. During the scan, the technician got up and ran out of the room to find the doctor. I knew then it was serious, but I didn’t expect a diagnosis of pancreatic cancer.

I didn’t even know what my pancreas did. Of course, I went to the Internet and discovered very little information.

That next Monday, I had an appointment with a general surgeon at my regional hospital. He explained my diagnosis and said that he was going to surgically remove the pancreatic tumor on Thursday. It was all happening way too fast for me, and I knew I’d feel more comfortable with a surgeon who specialized in pancreatic cancer. I found the names of two top pancreatic surgeons and set up an appointment for a second opinion with one of them at a leading hospital about 90 miles from my home.

The new surgeon didn’t agree with the first treatment plan because the tumor was situated close to arteries and veins. It had already flattened a vein, making it risky to do surgery right away. He recommended a clinical trial that combined chemotherapy with radiation therapy to shrink the tumor before attempting to remove it. He offered to do it but suggested another surgeon who was just moving his practice to a hospital closer to my home. Coincidentally, that doctor was the other name I’d found. I was set up as his first new patient.

Although clinical trials were an entirely foreign subject to me, these two physicians were tops in their field and I trusted them completely. I would have gone with whatever they recommended.

The trial consisted of chemoradiation that lasted about six to eight weeks. The three chemotherapy drugs were pretty toxic, but I tolerated them. I pretty much lived on graham crackers, and I lost 50 pounds. I was just trying to hang in there. After a break from the chemoradiation, my surgeon removed the tumor using the Whipple procedure. There was no metastasis or lymph node involvement, but, because of where the tumor was sitting, it was diagnosed as Stage IIB. Not paying attention to my nutrition or fitness during the chemoradiation was a big mistake. Recovering from the tough surgery would’ve been easier if I’d been stronger.

I have three daughters and my oldest moved home from Alaska to take care of me. She was incredibly helpful. She told me she’d do the details if I handled getting better. She stayed for five years, even though I tried to convince her to stay longer.

I held a management position with a financial firm, and my coworkers took care of my accounts while I was in treatment. I was able to return to my job after a year. I was very blessed.

I had semi-annual, then annual, checkups for five years, and then my physician released me. However, because of the high recurrence rate for pancreatic cancer, I asked if we could continue to be “good friends” for one more year. We were, and I was more comfortable being monitored for a sixth year.

About six months after I returned to work, I decided to use my experiences to give back. The day I was diagnosed set off a series of emotions. I’m generally optimistic, but I went from being shocked and bewildered to angry. I wanted to change the fact that there wasn’t much information available for patients and their families. I joined the PanCan Action Network and, for 10 years, I talked with newly diagnosed patients. I also became involved as a patient advocate at the hospital where I got my second opinion.

When I retired from my full-time career, I asked the hospital where I was treated if they needed my assistance. I felt I could add value to their program. I reviewed their patient experience, from diagnosis through survivorship. After reviewing my report, the hospital made significant changes. They hired more staff, developed a patient manual and a dedicated patient website, and set up a patient council.

Today, I’m on the Stand Up to Cancer patient advocacy care team. It’s made up of a lot of heavy hitters in terms of cancer treatment centers. Our goal is to set a standard so that every newly diagnosed patient is genetically tested. There is a lot of promise in terms of precision-based medicine and potential treatments that come from biomarker testing and being educated by a genetics counselor.

I have a history of cancer in my family. My mother had ALS and then passed away from ovarian cancer. Because of that, more than 30 of my relatives have had genetic testing. I carry the BRCA2 mutation. When I was diagnosed, there was no known connection between pancreatic cancer and BRCA, but there is today. Just by chance, one of the three chemotherapy drugs I took was platinum-based, which we know now is more effective against pancreatic cancer. That was sheer luck.

I was lucky, but my hope is that others who are newly diagnosed won’t have to rely on luck to be treated successfully.