Living with NET: A Survivors Story

Josh Mailman

“It was what they call a ‘blind pickup,’” says Josh Mailman, President of NorCal CarciNET Community and internationally recognized advocate for neuroendocrine tumor patients, integrative oncology, and nuclear medicine and molecular imaging.

He is referring to the diagnosis of NET disease he received in late summer of 2007. Josh was 46 years old at the time, in good condition and seemingly perfectly healthy. It was at his annual physical that his doctor, checking under Josh’s ribcage, felt something unusual.

“We didn’t think too much of it at first,” Josh recalls. After all, why should we? Josh was completely asymptomatic; his lab work was normal, and he was feeling great. To be safe, his doctor instructed Josh to have an ultrasound at his earliest convenience, which he had a month and a half later.

“I was in urgent care for some respiratory symptoms.”

While he was having some other tests, the medical staff suggested he have the ultrasound as well.

“When they came back into the room after the ultrasound, no one was looking me in the eye anymore and I knew I had something really bad.”

As it turned out, he had tumors in his pancreas and liver. And so the journey began of Josh’s transformation from healthy 46-year-old male to someone living with an incurable disease. A CT scan followed by a biopsy confirmed the NET diagnosis.

At the time, there was no course of treatment and Josh was told the only option was to watch and wait.

“I decided to turn that option into ‘watch and learn’ instead.”

It was a full year before Josh even became symptomatic. Imagine what it must be like to know you have an inoperable, incurable disease, but you feel great.

“I had such a high quality of life going into this. It’s a hard thing to see that much disease in your body.”

Josh began learning everything he could about the disease, and he became involved with integrative oncology after seeing Donald Abrams, MD, a leading integrative oncologist with UCSF’s Osher Center for Integrative Medicine.

“I was using integrative care because there was nothing else for me at the time.”

“I learned what I could about the disease, and I met a support group that was forming in the bay area. I did not know anyone else who had this disease and I found the group through a friend, who suggested I visit the Wellness Community (now Cancer Support Community). It changed the path of my life.  Members of the support group were insistent about NET education so one could be ready to act when it’s time to act.”

Josh’s journey of learning and discovery took him to a patient conference in Toronto, where he met some European medical professionals who talked about nuclear medicine.

“I wanted to learn more. In December 2008, I went to Germany to receive the GA-68 Dota PET/CT, which I would later work on to help get access for US patients.”

He went onto receive three courses of PRRT treatment in 2010 and remained stable for six years. His fourth PRRT treatment occurred in 2016 and Josh has been stable since. Through it all, he continued to work with the medical community and with patient groups on managing their disease and their medical care.

Josh’s energy belies the true nature of his disease. His body of work and contributions to the NET community continue to grow and have an impact of the methods and courses of treatment in North America.

In 2011, he was invited to the first theranostics world  congress held in Germany, which led to a chance meeting with Henry Van Brocklin, PhD, of UCSF Medical Center and co-chair of the Society of Nuclear Medicine’s Patient Advocacy Advisory Board (PAAB). Dr. Van Brocklin invited Josh to join the PAAB     in 2012, a position he continues to hold. He was the inaugural president of the PAAB for SNMMI.

He also works with several NET organizations, Nuclear Medicine Societies, and as a member of the National Cancer Institute’s GI and Patient steering committees.

“I became president of the patient organization I was originally a member of – NorCal CarciNET Community – and we are now one of the largest organizations of its kind. We are here to support patients and those who care for them better understand their journey using the collective wisdom of the group.”

Josh sees the adoption of nuclear medicine in the treatment of NETs in last 4-5 years as one of the most important advancements in the field.

“I along with so many from around the world have worked very hard on this,” he says.

“It is the specialty medical societies that advance the art and train young professionals allowing the transfer of knowledge to new investigators, researchers, new clinicians and allow everyone to share best practices and ideas.

Josh’s work has been acknowledged by the groups he works with including the SNMMI’s President Award, The Monica Warner Award for NET Patient Advocacy, and recognition by NANTES and the Society for Integrative Oncology (SIO).

“NANETS plays a vital role in the NET Community. We need to be sure those who treat us as patients also share their knowledge across the widest medical and care continuum. We need to continue to support and train those interested in caring for patients with NETs. NorCal CarciNET Community supports NANETS and our medical community by giving scholarships to medical professionals in our area      who wouldn’t normally be able to pay to attend a national conference.”

So, for Josh Mailman, entrepreneur, advocate – and patient – the journey of watching and learning continues.