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.

“It May Not Be Too Little or Too Late: Resecting Primary Small Bowel Neuroendocrine Tumors in the Presence of Metastatic Disease” By James R. Howe, MD

Click here to read Dr. Howe’s article featured in Surgical Oncology – the official Journal of the Society of Surgical Oncology

Allied Health Professionals Are the Glue That Binds NET Programs Together

Neuroendocrine facilities around North America all have one critically important component in common: the allied health care professionals who create, facilitate, and maintain their programs. We recently discussed the roles of allied health in NET care and treatment with two NANETS members: Pamela Ryan, RN, BSN and Angela Laffan, NP, MSN

Pamela Ryan, RN, BSN

Pamela W. Ryan, RN, BSN, has been in nursing for 32 years, the last 13 having been spent in oncology, specifically NET disease. Ms. Ryan serves as Nurse Manager for the Oncology Services and Infusion Center, Ochsner Medical Center in Kenner, LA. She was instrumental in creating the New Orleans Louisiana Neuroendocrine Tumor Specialists (NOLANETS) Clinic. After the facility was incapacitated by Hurricane Katrina in 2005, Pam made the daily 140-mile roundtrip commute from New Orleans to Baton Rouge to ensure her patients received the necessary care.

She played a vital role in building NOLANETs after the hurricane and was responsible for its overall growth by organizing the clinic, putting protocols in place, and scheduling appointments, scans, and surgeries for patients. She also voluntarily attended tumor boards after normal business hours to understand treatment plans for her patients and helped put of town patients find a place to stay during their appointments.

Ms. Ryan is a charter member of NANETS. She sits on NANETS’ Education Committee and she is the 2019 recipient of the Monica Warner Patient advocacy award, sponsored by Novartis.

Ms. Ryan characterizes the growth and evolution of NANETS since its inception in 2006 as evolutionary.

“It has certainly come a long way and gone through many twists and turns. It was amazing to see all these physicians get together in the beginning, all with a shared passion for understanding and treating NET disease.”

NANETS mission has evolved during the last 17 years, placing greater emphasis on research, and helping young scientists advance in the field.

Along the way, NANETS developed an allied health arm, which waned over the ensuing years, but has come back strong in the last two years, according to Ms. Ryan. There has been more attendance at regional programs and symposia, and a greater effort to make room at the NANETS table for allied health professionals.

Ms. Ryan sees firsthand the impact of the allied health team within the greater framework of the NET program. As the person responsible for programming, protocols, and implementing different service lines and treatments for NET patients, Ms. Ryan sees the allied healthcare role as a central cog in the wheel of NET services.

“Nurses are in the center of making the wheels turn, right alongside the patient who is also in the center. We pull together the specialties - anything that patient needs. We serve as true patient advocates and work to make it as easy as possible for them.”

As a patient advocate, one of Ms. Ryan’s main missions is to help educate the patients and the medical community.

“I’ve been very active in patient driven as well as professional conferences. So many patients get misdiagnosed for many years. It’s so important to educate as many patients and members of the general oncology community.”

Angela Laffan, NP, MSN

Angela Laffan, NP, MSN, is Assistant Director, Gastrointestinal Oncology Survivorship Program at University of California, San Francisco. She is a native of Australia and a devotee of holistic care. As a nurse practitioner in oncology since 1989, Ms. Laffan saw a “smattering” of NET patients. Working with Pamela Kunz, MD at Stanford exposed Ms. Laffan to the larger NET population and she became intrigued by the chronic nature of the illness.

She has been with Emily Bergsland, MD, UCSF for the last 5 years, serving as nurse practitioner for patients undergoing active treatment. She also runs the gastrointestinal cancer survivorship clinic. Patients who have been cured come to her and she facilitates their journey through the program.

Ms. Laffan also works with patients with chronic metastatic tumors, who have lived with them for many years.

“I’m interested in how we meet the needs of that population from a survivorship point of view.”

As a result, Ms. Laffan began a NET wellness clinic, which entails a monthly consult. Patients spend a half day at the clinic, with 30 minutes set aside to meet with a nurse practitioner, a nutritionist, an exercise therapist, a social worker and a cancer resource specialist.

“The goal of the clinic is to address patients’ needs before they become a problem and to introduce them to health care specialists so issues can be addressed proactively – rather than waiting for something like a financial crisis, for example, to occur. They now know who they can go to, whether it is for financially resources, nutritional advice and or something else. Our NET patients won’t be cured, but the longer they live, the more potential they have to get another illness.  The exercise and nutrition counseling optimizes their wellness and it’s a big focus of the clinic and of survivorship.

Ms. Laffan became a NANETS member during her tenure at Stanford and she has been very involved with allied health planning for the society over the last several years.

Ms. Laffan agrees that allied health care providers play an integral role in the care and treatment of NET patients and she feels the allied health community should not be separate from physicians, researchers and scientists.

“Physicians need to incorporate and understand the role NPs play in patient care holistically – you really need the voices of all different people – those who look at the patient with different eyes. Separating NPs and other allied health providers defeats this purpose. I want to see a more integrated approach to caring for patients and everyone having an equal standing and voice in that conversation. Hopefully NANETS is moving in that direction. Because NANETS is a relatively small society, it is easier to be nimbler and more flexible in changing directions. Many of NANETS leaders understand the importance of making it clear we are just as important as the rest of the team. Afterall, we all have one focus: to cure the disease and increase patients’ quality of life.”