NorCal CarciNET Community joins others in the medical community objecting to Humana's decision to deny coverage for most PET and SPECT procedures starting on February 4, 2021. The NET community relies on PET imaging to better understand our disease and to establish if we are candidates for PRRT therapy. 

We hope others will join us and let Humana know that this policy is endangering the health of those with NETs and diseases.

To download our letter to Humana, please click here.

We are beyond grateful that Rebbeca Katz, author of the "Cancer Fighting Kitchen" and Jen Yasis, Founder of the Healing Kitchens, took time to answer questions that our neuroendocrine tumor community had on eating while we are all staying home and limiting our exposure during this pandemic.

This information does not constitute professional medical advice. For questions regarding your own health, always consult a physician.

Recipes referenced in this video: 
My Everything Drizzle  Magic Mineral Broth  Cozy Roasted Vegetable Soup  Roasted Fingerling Potatoes with Pesto

Search the Recipe Box at more herby drizzles, dollops, other blended soups, and recipes.
Remember to omit minor ingredients that are not recommended for a NET or CS diet or that you know are not well tolerated. 
Vinegar was mentioned in the video to clean fruits and vegetables -  this is for other bacteria (NPR: What does it take to clean fresh food)

THIS EVENT HAS BEEN Cancelled due to COVID-19

2020 Bay Area Neuroendocrine Tumor Patient ConferenceStanford Medicine V web
Hosted by: Stanford University Medical Center and NorCal CarciNET Community
In cooperation with UCSF
Sunday, March 8, 2020 - 8:30 am to 4:30 pm The Frances C. Arrillaga Alumni Center, 326 Galvez St, Stanford, CA 94305

The day will feature nationally-renowned Stanford and UCSF NET experts, along with other internationally-known physician specialists who will offer sessions on a wide variety of topics pertaining to Neuroendocrine Tumors (NETS) including surgery, liver-directed therapy, imaging, PRRT, current clinical trials and strategies for living well after diagnosis. A pre-conference “primer” is offered for those newly diagnosed or in need of a refresher on the basics of NETs. We will also have breakout sessions by disease types. 

We are honored this year to have as our keynote speaker, Rebecca Katz, chef, and author of numerous cookbooks including "The Cancer Fighting Kitchen." 
Watch a live cooking demonstration with Ms. Katz where she'll teach you recipes and cooking strategies for maximizing the cancer fighting potential of food while minimizing cancer treatment-related side effects.  

Open to patients, caregivers and those interested in NETs.

Thanks to generous support from Stanford Medicine, NorCal CarciNET Community, and our Partners there is no registration fee. Conference registration includes lunch and parking.

Click on Read more info for speakers, and agenda.

We are posting questions that are being collected at

We are grateful to Dr. Pamela Kunz, MD (Oncology) and Dr. Janice (Wes) Brown, MD (Infectious Disease)
of Stanford University for their assistance in answering these questions.

As information is changing rapidly - Please consult with your medical team and the resources listed below for any updates or changes.

We welcome you to join our mailing list to be kept up to date.

If you experience symptoms of fever, cough or breathing problems please call your medical provider immediately to be evaluated for COVID-19.

Click here for COVID-19 and NETS Frequently Asked Question Page

Interview with Dr. Pamela Kunz on 2020 Bay Area Conference Cancellation and COVID-19


On October 18, 2019, an opinion piece that NorCal CarciNET Community’s Josh Mailman opinion article (“CMS policy shouldn't penalize those with rare disease”) was published by The Hill,  The opinion piece highlighted the challenges with the current method that Medicare/CMS use to pay for radiopharmaceuticals. This webpage provides more information on how this will impact NET patients and providers along with a  tool for those that are interested in taking action.

The Medicare Diagnostic Radiopharmaceutical Payment Equity Act of 2019 (H.R. 3772),  which many in the nuclear medicine community are working on to help improve, will impact Medicare payments for imaging only. This bill is not looking at broader medical payment, billing or cost issues.


In 2008, Medicare/CMS simplified how CMS paid for PET Imaging. The simplification reduced an infinite combination of supplies and tracers to a few PET bundles based on tracer cost. These bundles allowed a provider to bill for all PET imaging in a simplified manner. The most expensive bundle is ~ $1,400 (there are some regional adjustments).