My Totally Uninteresting Story

Andi Benjamin

• Research study led to diagnosis
• Interdisciplinary team of doctors due to underlying medical conditions
• PNET diagnosed early
• Watch and wait

My story is not interesting at all . . . and that’s the way I’d like to keep it.

I participated in a research study at the University of California San Diego (UCSD) that pertained to new technologies. It started in September 2022. That month, I had a full body scan and then a routine colonoscopy that revealed what they thought might be a cyst. (I’m prone to cysts.) They did a biopsy, which confirmed that I had a malignant neoplasm of the tail of the pancreas.

I was immediately given access to the heads of the UCSD Health Pancreatic Cancer Program and was introduced to oncologist Dr. Paul Fanta and surgeon Dr. Andrew Lowy. I have other severe medical conditions, so my primary care doctor, Dr. Marlene Millen, created an interdisciplinary medical team to coordinate my care and help me sort out reality versus perception. I have an incredible care team!

One additional detail that made my diagnosis particularly terrifying was that my daughter had suffered a stroke just a few months earlier. It was an emotional pile-on for my family and me. I had no option but to realign my personal and professional priorities with my determination to make every minute count. Fortunately, she’s made a remarkable recovery and is my hero.

Keeping an Eye on Clinical Trials

As a neuroendocrine tumor, mine is self-contained and has not spread, so no treatments have been administered yet. I get regular MRIs (with and without contrast), as well as routine blood work. This is the same type of tumor that Steve Jobs had, with a big exception: Mine was diagnosed super early and is trackable. His tumor was diagnosed after it had “exploded.” There are no great treatment options . . . yet. But Drs. Fanta and Lowy hope that a therapy treatment will be available when I need it. They included me on the list for potential clinical trials if any become available.  Another option is surgery, but that is an unlikely choice for me because I have other physical challenges, including heart disease and blood problems.

I have learned to live with this ticking time bomb and to do what I can to bolster my physical and emotional reserves. Fortunately, we caught it early and I’m the kind of person who sees threats as opportunities to improve and reposition. I get tons of help from therapy and use my experience to plan my time in the most meaningful way. Relationships (versus business achievement and success) are the center of my life. I surround myself with people and experiences that bring me joy.

I have done genetic testing for pancreatic cancer, breast cancer (mine was successfully treated in 2013), and other medical issues. None of them are hereditary (thank God). I am a person who inhales information—the more, the better.

No Tumor Growth . . . YET

Am I scared? You betcha! But I’m confident that the quality of care is outstanding and that the pancreatic specialists are hard-wired to find optimal treatments in testing and for the future. Right now, I am still in stage I with no tumor growth. However, my next scan looms ahead, and I knock on wood that sharing this story doesn’t jinx me!

It’s hard to juggle all the balls that seem to be flying at once, but I make time for myself in various ways. The discovery of the tumor was a positive wake-up call: Sickness and mortality are real. It’s what you do while you can do it that brings joy.

I treasure every second with family and friends. Even though I’m semi-retired, I redefined my consulting business and adopted the “No Asshole Clients Rule.” I’ve become a political activist focused on motivating retired people to use their voices to fight for democracy by providing education, tools, and support. I embrace spontaneity. I feel so lucky that this disease heightened my mindfulness. I’ve also been focused on better health, including at least one and a half hours of exercise daily. So, in short, everything’s good here.