Faces of Philanthropy:
Joe Castrovinci

“It matters to us that we support the scientific research that has enabled me to live with NETs this long.”

—Joe Castrovinci, founding member, NETRF Legacy Society

A New York City native who dreamed of being a college professor, Joe Castrovinci was a newly minted Ph.D. in 1979 when he moved to California and took a job in corporate communications.

“There wasn’t much opportunity in academia in the late 70s, and I needed to work, so I took a job in corporate communications, writing articles and speeches, editing publications, and, later in my career, posting items to social media. I spent most of my working life at AT&T, which turned out to be a great gig,” he said. “In the years when I was a speechwriter, for example, I discovered that nothing beats traveling with the CEO on his private plane, right?” he joked.

Retired in 2010, it was that same year that Joe’s primary care physician didn’t like some of the blood results she reviewed after a routine exam.

“I had zero symptoms,” he said. “I was feeling completely normal, really fine.”

After a series of scopes and scans, Joe’s care team decided that exploratory surgery was necessary to determine what was throwing off his blood tests.

Surgery provided the elusive answer: Joe had a neuroendocrine tumor in his mid-gut with mets to his liver. After surgery to remove most of the tumors, he was essentially back to normal health.

Joe (above, on right) and his husband of thirty-one years, Gordon, live in Twin Peaks, a neighborhood of San Francisco, California.

“Living where we do, we are incredibly fortunate to have access to outstanding healthcare, and I ended up in the exceptional care of Dr. Emily Bergsland at the University of California at San Francisco, and to this day she is still my NET provider. You’d be very hard-pressed to find a more conscientious or knowledgeable doctor, or one more committed to the well-being of her patients, than Dr. Bergsland.”

“As soon as we had a solid diagnosis, I also went online and found the NorCal CarciNET support group, which proved to be a huge lifeline. And talk about serendipity – shortly after my diagnosis NETRF was holding a conference at Stanford, and I was able to go and meet so many amazing people who are living with this disease, or supporting people with NETS,” he said.

“Also, the NorCal CarciNET group I’m in is headed by the incredible Josh Mailman, who is also on the NETRF board. Josh is amazingly knowledgeable about NETS, and also extremely generous with his time and expertise. He’s an all-around incredible human being, and I’m very lucky to be able to call him a friend.”

Once his diagnosis was solidified, Joe had surgery at the Stanford University Medical Center and started sandostatin shots to manage his tumor, which he still receives today. “I was really stable, very healthy for eight or nine years post-diagnosis,” he added.

“Find your community and know that you are NOT alone in this journey. And now, with the pandemic, our communities are easily accessible thanks to social media and Zoom,” he said.

Recently there has been some minor tumor growth on Joe’s liver, for which he has had had two chemoembolizations which were very successful, along with a series of radiation treatments that data show have a 95% success rate.

“Believe me, I know how incredibly lucky and fortunate I am to live with and manage this disease successfully, and thanks to ongoing research funded by NETS Tumor Research Foundation and others, I hope and expect to continue to be able to control it,” he said.

Joe and his husband Gordon, a retired MIT and Stanford-trained theoretical physicist (“When he talks about his work I just nod but I really have no clue what he’s doing!”) spend their time supporting non-profit organizations important to them. Joe uses his love of the written word to write and edit content for non-profits, including the SETI Institute, Kiva.org, and San Francisco’s Oscher Lifelong Learning Institute. He also does work settling refugees from Iran and Uganda for Jewish Family and Community Services.

“We’re very active in helping immigrants and refugees, especially gay individuals, emigrate to the US from countries where their mere existence is against the law,” he explained. “I’ve helped about a dozen or so people resettle in the Bay Area, and that’s been incredibly rewarding for both me and Gordon,” he added.

In their estate planning, Joe and Gordon have included several non-profits, including NETRF.

“Gordon and I know that I have lived this long and this well strictly due to the hard work and sacrifice of researchers and patients who navigated NETs for years before my diagnosis; they laid the groundwork for the successful treatments and therapies that allowed me to live relatively unscathed with this disease for many years. It is important to us that we give back and support NETRF until the time comes when neuroendocrine cancer ceases to be an elusive and insidious disease and is finally cured.”

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