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Lauren and Nick.

Dave, Suzi, and Lauren at 2011 Focus on Neuroendocrine Tumors Conference in Philadelphia, PA

Dave, Suzi, Lauren - Philadelphia, PA

Patient Education Events from Coast to Coast

Having just returned from two Caring for Carcinoid Foundation Neuroendocrine Tumor Patient Education Events, I would like to share some common themes from the East and West Coasts.

Dr. George Fisher with Don and Karen FosterOn September 10, 2011, CFCF and Stanford University co-sponsored the second annual Neuroendocrine Tumor Patient and Caregiver Conference.  It was a warm and informative day featuring both formal presentations and informal breaks.  We were thrilled to meet members of support groups from all over California – including neuroendocrine cancer advocate Jan Naritomi-Hart, who trekked up from SoCal.  The event also featured poster presentations where patients had the opportunity to learn about neuroendocrine tumor research projects, including clinical trials, at Stanford!

The day concluded with a compelling patient and caregiver panel.  Thank you to our participants for bravely sharing their personal stories and providing inspiration to the audience of nearly 200 people!  Please click here for the complete agenda and stay tuned for announcement of the video links where you will be able to watch each presentation.

Dave, Suzi, Lauren in PhiladelphiaOn September 16, 2011, we were back on the East Coast to partner with the Abramson Cancer Center of the University of Pennsylvania for a patient education event in Philadelphia.  This was our first event in the mid-Atlantic and it was wonderful to meet so many new people.  It was also a pleasure to finally meet Suzi Garber of The Patient Project with whom we had also collaborated on the event. Presented by Dr. David Metz, CFCF was honored to receive the Neuroendocrine Tumor Foundation Advocacy award from the University of Pennsylvania.  I was also personally honored to receive a pair of beautiful sunflower earrings from Suzi. These earrings are available via Suzi’s website, thezebrashop.net and what’s more, Suzi sends 10% of each purchase of items from "The Sunflower Room" to CFCF to support our research! Click here for a link to the earrings.

Suzi joined CFCF Board Member Dave McCoy for a patient panel to conclude the event.  Dave helped wrap up the panel by affirming, “Yes I have cancer but I also have a life!”

The Philadelphia Conference was CFCF’s most global event yet.  Scores of patients tuned in for a live broadcast over the internet, and to chat with neuroendocrine tumor experts in real time web-chat.  Video of the conference is available here, and the transcript of the chat can be found here.  A huge thank you to the Abramson Cancer Center for coordinating these terrific programs.

Although the meetings were separated by ~3,000 miles, there were a few common themes heard over and over:

  1. Neuroendocrine tumor patients should be treated at a multidisciplinary center where they have access to multiple specialties experienced in treating neuroendocrine tumor patients including oncology, surgery, radiology, pathology, radiation therapy, nutrition, nuclear medicine, etc. It is not necessary for all specialties to review a patient’s chart at each visit, but they should be consulted at major decision points.  In this way, patients can ensure they are getting all the information they need to make informed decisions about their care.  The tumor board case discussions at the Stanford event helped illuminate how specialists work together to optimize patient care.

  2. While there are many common themes, each patient is unique and his or her treatment plan should be unique.  Patients often call asking for statistics and “what is the best thing to do?”  Faculty at both events reiterated that each patient is different and the order of interventions varies on many factors unique to each patient.

We encourage all patients with neuroendocrine tumors to empower themselves through information, to consult with doctors at multidisciplinary centers with experience in treating these cancers, and finally, to make decisions that are right for themselves.  We also encourage patients to network and learn from one another but stress the importance of not comparing oneself to another patient or to statistics.  Each patient is an individual and can take an active role in optimizing his or her personal care.  We believe in supporting patients on this journey – please review the information on our website, join us for patient events and most importantly, let me know how we can help keep you informed.

I am looking for a support group for families with carcinoid cancer. My mom recently was diagnosed with carcinoid cancer and me and my 8 year old daughter are having a hard time dealimg with this. As you know this isnt a typical cancer so we need some support for our understanding and sadness. Please help direct us to the correct person. I live in NC... Thanks
What an amazing Symposium by the Abramson Cancer Center! Thank you CFCF for giving us access to this really informative day on the web. It was well worth the time spent on each speaker. What an amazing group of speakers.
Lauren, You are quite the NET ambassador - a caring, supportive advocate who never stops. On behalf of our NET community in the Delaware Valley (Philadelphia)- KUDOs and thanks. Our journey is far from easy, thanks for helping to bring the sunshine into our world and pointing the way to the light at the end of the tunnel. My best wishes, Suzi

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