NANETS produces a weekly publication, Weekly Net Connection. It contains information on recent NET disease research, guidelines and resources. It also highlights NET continuing medical education (CME) programming, medical society developments, member accomplishments and news from other NET organizations. Have news to share? Contact us! Net News is a benefit of membership in NANETS. Not a member? Subscribe now!

“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 RyanHeadshot
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
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.”

A Special Online Event

NANETS hosted a special online program for NET patients, families and caregivers, "COVID-19 Information for Patients and Caregivers" on Thursday, April 23, 2020 from 8:00 - 9:20pm ET.

A panel of NET specialists will engage in an open conversation about COVID-19's impact on NET patients as it relates to treatment decisions and institutional protocols. Moderators will be posing questions to specialists, as well as providing a 20-minute window for Q&A. Patients, families and caregivers are encouraged to submit questions before the event. The panelists will answer as many questions as possible during the online program.

There is no fee.  We will ask each participant to register in order to gather questions, and simply know how many participants are patients, medical professionals and others with an interest in the topic.  Full name and other identifying information will be optional.  No information will be shared or used by NANETS in any way. Content is provided for informational purposes and does not take the place of discussions with your treatment provider.