Welcome to the Capital Area Carcinoid Cancer/Neuroendocrine Tumor Survivors’ group (CACS) of the DC, VA and MD region.  Founded in 2001, CACS is open to NET patients, families and caregivers.  We meet monthly for mutual support and to learn more about this rare disease and the latest treatments.  For dates of meetings and planned topics, please visit our Meetings page or contact us at CACSNETS@gmail.com.


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Immediate Upcoming Events include:

2019 CACS Meetings

  • March 9, 2019 10 AM – 12:30. Topics: patient sharing session, discuss information obtained from members that attended the events listed below, and hear about upcoming activities. (Location)

  • April 13, 2019 – Sharing Meeting

  • Special May DateMay 4 (1 week earlier than our usual meeting) – join us for our Bea Lehming lecture with Dr. Zacks, Mt. Sinai Carcinoid Heart Disease Specialist.  (Meeting to be held in collaboration with the NCAN regional meeting .)  Watch for details.

  • Note: CACS does not recommend any program or physician, but always recommends seeking an opinion from a recognized NET expert before making any treatment decision.

Other Events and News:

(with Details on our Future Events Page)

  • NETS Patient Symposium: 8th Annual Focus on Neuroendocrine Tumors ConferenceFriday March 8 at PennMedicine, Philadelphia  For information, and to register (free) use this link

  • NIH Rare Tumor Research Study – Now Operational.  For details and to apply, click here

  • CBS to air Aretha Franklin special March 1oth 9 pm on WUSA9
    Aretha Franklin’s doctor discusses her PNETS. View it Here
  • Rare Disease Week: CACS members visited offices of Congressman Raskin and Senator Cardin on Feb 27(More news to follow.)

  • Cancer Support Community Education Session – “Frankly Speaking about NETS and Carcinoid Cancer” – Saturday 3/2 : a copy of the slides will be available shortly.

  • NETRF awarded $2.5M for 8 research grants. Details

  • NET Vitals Form- Physician Conversation Prep Sheet – Available

  • PRRT Was Approved January 26, 2018:  The targeted NETs therapy, Peptide Receptor Radionuclide Therapy (PRRT) was approved under the FDA’s orphan drug designation. For full details, see the Advanced Accelerator/Novartis site

  • More PRRT News:  “Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective”    Click here to see the full article

Recent Special Speakers  

Visit our News & Resources for presentations and webinars from the Carcinoid Foundation, Dr. Amit Tirosh, Dr. Edward  Wolin, Dr. Naris Nilubol, Drs. Sue and Thomas O’Dorosio, and more.