Services and resources

NET-specific services:
 

click on the links below for details

PRRT (Peptide Receptor Radionuclide Therapy) is currently available at UCSF.

PRRT stands for Peptide Receptor Radionuclide Therapy. Peptide refers to a small molecule that is very similar to the naturally occurring hormone somatostatin. We call it a somatostatin analog, meaning that it is similar but not identical to somatostatin. There are a number of somatostatin analogs that are use in patients with neuroendocrine tumors including octreotide, sandostatin, lanreotide. These peptides bind to the somatostatin receptor that is expressed on the majority of neuroendocrine tumor cells. Click for information on referring


UCSF Neuroendocrine Tumor Board (NETB)

Complex neuroendocrine tumor cases at UCSF are reviewed at this multidisciplinary conference twice a month. These cases typically involve locally advanced or metastatic disease for which the diagnosis and optimal treatment are unclear. Representatives of the team—including medical oncologists, surgical oncologists, radiation oncologists, interventional radiologists, nurses, nurse practitioners and nuclear medicine specialists—are generally in attendance. A diagnostic radiologist reviews relevant scans and projects the images onto a screen for viewing by tumor board participants. Often, a pathologist will review pathologic samples before the conference to confirm the diagnosis and grade of the tumor. Other specialists, such as colorectal surgeons or endocrinologists, also attend as needed.

The review may encompass tumor and patient characteristics, work-up results, treatment plans and clinical trial options. Tumor board discussions facilitate a comprehensive, coordinated approach to cancer care and are particularly valuable for challenging cases.


UCSF Adrenal and Endocrine Pancreas Tumor Board

This monthly clinical conference brings together surgeons, endocrinologists, oncologists and radiologists at UCSF. Cases of adrenal gland tumors and selected hormone-secreting pancreatic NETs are presented. After careful review and discussion, the team collectively makes management recommendations for each case. The Adrenal and Endocrine Pancreas Tumor Board partners with the Neuroendocrine Tumor Board on management of complex NET patients, including those with malignant pheochromocytoma, paraganglioma, adrenocortical carcinoma or pancreatic neuroendocrine tumor.


NET Patient Education and Support Group

This bimonthly meeting is for patients with all types of NETs/NECs and their families and caregivers. Designed to provide a forum for education and support, it is free to all patients—regardless of where they receive care—and their caregivers, friends and family members. Developed in collaboration with Norcal CarciNET, monthly meetings alternate between two sites, one in San Francisco and one in the East Bay:

ODD MONTHS: First Wednesday of the month, noon-2 p.m.
Mission Bay campus
UCSF Mission Hall, Room 2100
550 16th St., San Francisco
(Entrance of Fourth St.)

EVEN MONTHS: First Saturday of the month, 1 to 4 p.m.
Cancer Support Community of Walnut Creek
3276 McNutt Ave.nue, Walnut Creek

NorCalCarciNET.org


Center for Adrenal Tumors

Coming soon!


Small NET Clinic

Coming soon!


UCSF Carcinoid and Neuroendocrine Tumors Cardiovascular Care Clinic

The Carcinoid Heart Disease Clinic provides cardiovascular care for patients with neuroendocrine tumors and carcinoid heart disease

Compassionate cardiovascular care.
At UCSF, we have developed a multidisciplinary cardio-oncology team that works hand-in-hand with patients and their local providers to help NET patients reach their goals.  This means having cardiologists who understand the challenges that face patients with cancer, who keep current on how the latest cancer treatments may affect the heart, and who communicate regularly with oncologists.  NET patients may develop problems with difficult-to-manage high or low blood pressure, heart valve problems, or heart rhythm problems.  NET patients may need the assistance of a cardiac team to screen for the development of heart disease.  Patients with overt heart disease may need to be treated with medication or interventions.  Patients undergoing NET surgery or interventional procedures may need a cardiac evaluation or “clearance” to prepare them for a smooth experience.

Comprehensive cardiovascular testing.
Evaluation may begin with noninvasive cardiac testing such as detailed echocardiography (heart ultrasound) evaluations in our center with decades of experience recognizing the early heart valve manifestations of carcinoid heart disease.  In addition, UCSF has a state-of-the art cardiac MRI program that allows for superb qualitative and quantitative valve assessment.  Our cardiac stress testing laboratory is experienced in the unique considerations that must be afforded to patients with NET, so as to avoid complications of blood pressure instability or side effects from stress testing which are unique to NET patients (flushing, for example).  Our cardiac catheterization laboratory has a robust protocol to safely perform invasive cardiac testing, when needed, so as to avoid stress-induced NET complications. 

Coordinated cardiovascular consultation.
Our cardiac team consists of general cardiology and heart valve specialists, interventional cardiology, cardiac radiology, and cardiothoracic surgery.  We are able to see patients at UCSF Mission Bay and coordinate appointments with GI oncology, as well as at other locations in the city (Pacific Heights and UCSF Parnassus).  Our cardiovascular team consults with one another and coordinates care with oncology, surgery, interventional radiology, and anesthesiology to ensure a smooth process for patients undergoing medical, interventional, or surgical cancer treatment.  Our inpatient cardiovascular team also provides continuity for patients admitted to the hospital.  We hope to provide a one-stop experience for NET patients. 

Innovative cardiovascular care models.
We understand that for some patients with NET, coming for frequent appointments can be challenging.  However, for patients with difficult to control blood pressure, careful and frequent communication and medication adjustments are necessary.  Our doctors have developed a remote monitoring program using our experienced team of nurses and pharmacists, to empower patients and enable enhanced and rapid communication regarding blood pressure management by phone or electronic messaging.  We also have a telehealth program that allows you to follow up with your cardiologist by phone or via a smartphone app from home to avoid subsequent visits, when medically appropriate.  For some patients, treatment goes beyond medications and sometimes heart surgery is needed.  UCSF is a heart valve specialty center for all valve patients, and in addition our cardiac surgeons have extensive specific experience in valve surgery for NET patients.  For some patients, standard surgery may not be possible due to frailty or the complicated nature of their condition.  In these special circumstances, we have even pioneered heart valve replacement with minimally invasive surgical or catheter-based procedures.  While we bring our expertise to NET patients, we are also continuously learning and refining our knowledge.   


UCSF Cardiovascular Care and Prevention Center (415) 353-2873

Other resources and services for NET patients:

UCSF 500 Gene Mutation Profiling

UCSF 500 The UCSF Cancer Genomics Core Laboratory (CCGL) offers the validated UCSF500 cancer panel for patient care. The panel is used on clinical samples, sequencing both tumor and normal tissue to identify the drivers within a patient’s tumor and potential therapeutic targets. The assay uses hybridization-based target enrichment of approximately 500 cancer genes for sequencing and analysis of mutation and copy number changes (http://cancer.ucsf.edu/intranet/ccgl). Selected genes are also analyzed for structural rearrangements.


Molecular Tumor Board

Molecular Tumor Board The UCSF Helen Diller Family Comprehensive Cancer Center Molecular Oncology Initiative is a key component of UCSF’s Precision Medicine Initiative.

One of the primary goals of this effort is to integrate genomic findings from molecular diagnostic tests (like UCSF500) with the expanding number of targeted therapeutics (FDA-approved and/or in development) in order to improve patient outcomes. Molecular Tumor Board, which brings together practicing oncologists, cancer researchers, pathologists, genetic counselors, and bioinformatics experts to share their knowledge in the context of real-time discussions of cancer cases at UCSF Medical Center.


Cancer Risk Clinic and Hereditary Cancer Clinic

The Cancer Risk Clinic and Hereditary Cancer Clinic identifies families and individuals at high risk for cancer by analysis of the family cancer pedigree, assessment of heritable risk, and testing for specific genetic mutations. The program members provide professional service to clients, educate the community and health professionals about hereditary cancer risk, and conduct research on cancer risk and prevention.

Neuroendocrine tumors may be caused by a mutation in the MEN1 gene or a mutation in one of several other cancer susceptibility genes that have been seen in families with neuroendocrine tumors (such as SDH, VHL, RET, TSC1, TSC2, MLH1, MSH2, MSH6, PALB2, APC, MUTYH, and CHEK2). Features suggestive of a hereditary cancer predisposition include young age at cancer diagnosis, multiple primary tumors in the same individual, multiple affected family members on the same side of the family, and rare tumor types associated with known hereditary cancer syndromes. Patients with medullary thyroid cancer or paraganglioma/pheochromocytoma seem to be at particularly high risk for occurring in the setting of a hereditary syndrome. In addition, recent data suggest that patients with apparently “sporadic” pancreatic NET may be at greater risk for inherited syndromes than previously thought (including alterations in MUTYH, BRCA2, CHK2, MEN1, VHL), thus our threshold for referral to genetic counseling (aka Cancer Risk clinic) for testing is relatively low.


Gastrointestinal Oncology Survivorship Program

The UCSF Gastrointestinal Oncology Survivorship Program cares for men and women who have completed treatment for any type of gastrointestinal cancer and/or are living with metastatic disease that is stable on therapy.  Providers seek to promote wellness, to help patients learn more about health issues and stressors that may occur after treatment and to provide patients with strategies to address these issues. A number of resources from many different specialties are available, including nutrition, exercise and rehabilitation, psycho-oncology, fertility and sexual health, stoma care, integrative oncology and genetic risk counseling. Care is coordinated by clinicians with expertise and training in both survivorship and gastrointestinal cancers. They work collaboratively with a patient’s other health care providers to ensure that knowledge and understanding of your cancer history informs your ongoing care.


Early Phase Clinical Trials Unit

Overview: The Early Phase Clinical Trials Unit offers novel therapies to Stage IV cancer patients who otherwise have few treatment options or have tumors that might be best treated with targeted therapies.  Solid tumor oncologists, hematologists, neuro-oncologists, pathologists as well as nurse practitioners, study coordinators and a project manager are all part of the Early Phase Program team.   This team works with pharmaceutical companies and other researchers, facilitating  drug development by applying laboratory results to human clinical  trials.   The goal is to develop new, effective  drug  therapies for the treatment of solid tumor and heme malignancies.

The Early Phase Program utilizes space in the Mt. Zion and Parnassus Clinical Translational Science Institute (CTSI) where study visits are conducted and treatment is administered. Patients have access to generalized and specialized imaging services either within walking distance of the building where the clinical trials are conducted and/or across the multiple UCSF campuses. To make an appointment or place a referral: 415-885-7796 


Cancer Immunotherapy Clinic

Overview: In addition to fighting off infections, a key role of the immune system is to prevent cancer from occurring. When a potentially cancerous cell develops, the immune system is programmed to recognize this cell as abnormal and to destroy it. Sometimes, however, these cells evade the immune system and are allowed to grow into cancers. Cancer immunotherapy works by “boosting” or “re-training” a person’s own immune system in order to fight cancer. Recent advances in cancer immunotherapy have given hope to both patients and physicians that some day soon we will be able to cure cancer without traditional chemotherapy.

The mission of the UCSF Cancer Immunotherapy Program (CIP) is to provide patients and their families with streamlined access to cutting-edge cancer immunotherapies. The Cancer Immunotherapy Clinic located at UCSF’s Ambulatory Care Center on the Parnassus Campus brings together expert UCSF physicians from across all cancer sub-specialties, working closely with scientists from UCSF and beyond to develop the cancer treatments of the future. This is our opportunity to revolutionize how we treat.

Contact the Cancer Immunotherapy Program


Osher Center for Integrative Medicine

The Osher Center for Integrative Medicine strives to successfully integrate modern medicine, healthy lifestyle practices, and established healing approaches from around the globe, in an effort to meet the need for a new model of care and daily living that promotes healing and well-being of the whole person - mind, body and spirit. Their practitioners are trained in both conventional and complementary therapies and offer a professionally guided whole-person approach to your healthcare. A variety of services are provided. Patients or providers may call 415-353-7716 to schedule an appointment or to speak with a Patient Navigator to determine which treatment, service, or program would be most helpful. Appointments may also be scheduled on-line.


Symptom Management Service

The Symptom Management Service (SMS) provides treatment and counseling for physical and emotional symptoms of cancer. Assistance includes help with pain, fatigue, depression, anxiety, advanced-care planning and spiritual issues. Treatments integrate medical, psychological, social work and spiritual approaches, which are offered along with regular cancer care. Care is coordinated with cancer treatments and with the support of patients’ doctors.  The SMS team includes palliative care physicians, all members of the Cancer Center social work program, the Ida & Joseph Friend Cancer Resource Center staff, and the Spiritual Care Services group. The team also collaborates with the UCSF Art for Recovery Program, members of the Cancer Center Psycho Oncology program and community organizations including Jewish Family and Children's Services. Appointments: 415-885-7671

June 2017, Dr. Emily Bergsland received the Ernest H. Rosenbaum, M.D., Commitment to Patient Care Award for her long-standing dedication to her patients and ongoing efforts to improve care for people with neuroendocrine tumors. The award recognizes clinicians who are deeply committed to the highest quality patient care.

 

In December 2016, Dr. Thomas Hope received the first NETRF/ERF Nuclear Medicine Pilot Research Grant. The Neuroendocrine Tumor Research Foundation (NETRF) established the grant to explore innovations in nuclear medicine focused on diagnosis and treatment. The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) solicited proposals and convened the scientific review panel to select the recipient. Hope’s project is titled “Intra-Arterial Peptide Receptor Radionuclide Therapy (I-A PRRT) using 90Y DOTA-TOC.” The primary goals are to evaluate possible liver, bone marrow and kidney toxicity after hepatic arterial injection and to evaluate imaging tumor response three months after treatment. Dr. Hope’s principal co-investigators are Dr. Emily Bergsland and Dr. Nicholas Fidelman.

 

In 2016, the Neuroendocrine Tumor Research Foundation recognized Dr. Eric Nakakura for his projected titled “Development of a Mouse Model of Pancreatic Neuroendocrine Cancer.” His xenograft mouse model will be useful in helping develop and test potential new therapies for pancreatic neuroendocrine tumors.

 

In 2016, the Neuroendocrine Tumor Research Foundation named Dr. Michael Germanthe NETRF Petersen Investigator for his project titled, “Treating Neuroendocrine Tumors via Synthetic Lethality.” His research aims to analyze how certain pathways interact to control neuroendocrine cell survival and death, and to evaluate synthetic lethal interactions—a gene therapy targeting cancer cells—in a patient-derived xenograft tumor model of pancreatic neuroendocrine tumors.

 


What is PRRT?

PRRT (177Lu-DOTATATE) is currently available at UCSF.

For evaluation, please request an appointment.

PRRT stands for Peptide Receptor Radionuclide Therapy.  Peptide refers to a small molecule that is very similar to the naturally occurring hormone somatostatin.  We call it a somatostatin analog, meaning that it is similar but not identical to somatostatin.  There are a number of somatostatin analogs that are use in patients with neuroendocrine tumors including octreotide, sandostatin, lanreotide.  These peptides bind to the somatostatin receptor that is expressed on the majority of neuroendocrine tumor cells. 

 

When binding to these receptors the peptide is brought into the tumor cell and stays there.  Because neuroendocrine tumor cells are one of the few cells in the body that express somatostatin receptors, we are able to target our peptide to the tumor cells using the receptor.  Radionuclide refers to the radiation that we attach to the peptide. 

 

There are different types of radiation that we can use, but in PRRT all the radiation given off is the type that can be used to kill cells.  Therapy refers to the idea that we are using peptides to target the receptors and bring the radionuclide into the tumor cells in order to treat the cells.  That is PRRT.

 

 

Published guidelines for treatment of NETs

UCSF Drs. Eric Nakakura and Emily Bergsland discuss carcinoid syndrome on ITV

 June 20, 2016


 

Dr. Emily Bergsland - NET Primer

January 24, 2016


 

The Patient & Family Neuroendocrine Tumor (NET) 2016 Conference

January 2016, Mission Bay Conference Center

Hosted by the HDFCCC in cooperation with NorCal CarciNET, NET Research Foundation, and Stanford University Medical Center