Welcome to the world’s first Lung Neuroendocrine / Carcinoid Cancer Patient Conference! Sponsored and produced by CCAN – the Carcinoid Cancer Awareness Network, with cooperation from Dr. Eric Liu and Lovable Lungnoids, this history-making event will take place Saturday, April 13th, 2013 at Vanderbilt University in beautiful Nashville, Tennessee!
Last April my beautiful Mother was diagnosed with a rare cancer called Carcinoid. At the time we had never heard there was a type of cancer called that. Less than 1% of all Cancers is carcinoid. Obviously getting the diagnosis of Cancer automatically instills a great sense of fear in everyone involved. The next few months were a troubling time for our family, as no one in Michigan wanted to remove her tumor. Two months later we still didn’t have a treatment plan and we felt like we were just getting the run around.
The problem with the rarity of NET Cancers comes misdiagnosis. On average patients are treated 3-7 years for the wrong disease. Most NET patients are diagnosed when the cancer has already spread. Early diagnosis dramatically improves outcomes. Physicians are often not aware of current diagnostic & treatment options. Others treat net tumors like a typical Cancer with radiation and chemotherapy, when it isn’t effective in treating the tumor.
My Mom most likely had her tumor for over eight years. As slow growing as it was, it grew enough to block part of her airway. Early diagnosis is crucial in prognosis. It is very common for patients with NET cancer to get passed around from Doctor to Doctor before finding out that they have NET Cancer.
One of the leading experts in the field is Dr. Eric Liu, who is the Director of Vanderbilt’s Neuroendocrine Center. He is a wonderful advocate and gift to the Carcinoid community. He was my Mother’s cheerleader and was the first Doctor to treat her like a person. Dr. Liu is a deeply caring and very special doctor, from welcoming patients with a hug to participating in support groups.
For those who have gone months and sometimes years waiting for a diagnosis and treatment plan, Dr. Liu is a beacon of hope for those struggling with NET Cancer. He has worked tirelessly in furthering the awareness and research of NET Cancers.
This conference is his vision of hope and progress for bronchial and all carcinoid patients and everyone whose life is affected by neuroendocrine cancer.
One of the keynote speakers of the conference is Dr. Dan Granberg, who is a specialist in endocrinology and internal medicine with more than 20 years experience in endocrine oncology. He treats many patients harboring neuroendocrine tumors – patients referred from all over the world, including European and Asian countries, the U.S., Canada and Australia.
His special interest is in neuroendocrine lung tumors and targeted irradiation therapy. He wrote his doctoral thesis on bronchial carcinoids. He has published more than 30 articles and is the author of a number of book chapters on bronchial carcinoids and neuroendocrine tumours. He is currently involved in several research projects in the field of neuroendocrine tumors He holds the position of Chief Physician at the Department of Medical Sciences, Endocrine Oncology at Uppsala University Hospital in Sweden.
Another speaker at the conference is Dr. Ronald Walker, who is a Professor of Clinical Radiology & Radiological Sciences at Vanderbilt-Ingram Cancer Center. His research is focused on molecular imaging of cancer both to improve early and accurate diagnosis and to provide rapid assessment of tumor biology with physiological imaging. He strives to use new tools to identify the risk level of an tumor at time of diagnosis, thus allowing up-front treatment decisions that will provide superior, safer and more cost-effective treatment strategies for each patient. One of his goals is for research that can lead to improvements in medical care that can ultimately be deployed with affordable, preferably off-the-shelf technology in community hospitals throughout the US so that everyone can ultimately benefit from the contributions he is able to make to the care of patients suffering from cancer.
Dr. Liu and Dr. Granberg will be meeting with patients the two days before the conference, April 11th and 12th. This is going to be a very rare moment to get to meet with both Doctors. They are advising patients to wait until February 6th to make an appointment with the Doctors. You can contact Vanderbilt at (615) 322-2391 or 877-936-8422.
Saturday’s (April 13th) Conference will feature informative expert lectures, an open forum with doctors and patients, social fun, and the chance to really connect with others who understand and share the experience of carcinoid cancer.
At the end of the conference will be the very first Lovable Lungnoids Support Group meeting. Lovable Lungnoids is a support group on Facebook. Started by Kym “Possible” O’Connor, a lung carciniod (aka “lungnoid”) patient, two weeks before her life-saving surgery, the group is now in it’s ninth month and has over 250 active members. Lovable Lungnoids is a place for lung carcinoid patients to not only find information and resources, but has become a caring family of patients encouraging one another daily.
You are welcome to join the group here: https://www.facebook.com/groups/lovablelungnoids/
If you are coming out of town and need a hotel CCAN was able to get discounts to two nearby hotels, Courtyard Vanderbilt/West End and Hilton Garden Inn Nashville/Vanderbilt. To find out more details visit: http://tinyurl.com/netcancer
The Lung Neuroendocrine/Carcinoid Cancer Patient Conference is sponsored and produced by CCAN – the Carcinoid Cancer Awareness Network. Maryann Wahmann is a carcinoid patient, founder and president of the Carcinoid Cancer Awareness Network (CCAN). She is an incredibly devoted advocate, making herself available 365 days a year via the CCAN’s hotline! CCAN, the Carcinoid Cancer Awareness Network, has produced over two dozen conferences benefiting thousands of patients and their families. For the past 9 years CCAN has provided information and support to NET patients and caregivers through e-mail, their web site, and toll free phone number 866-850-9555. Their phone line is open 7 days a week 9 am – 9 pm EST, 365 days a year!
To help with costs of this conference you can also make a donation to CCAN: http://www.carcinoidawareness.org/ccandonations.html
Please help spread the word and let everyone you know about the Lung Neuroendocrine/Carcinoid Cancer Patient Conference on Saturday April 13, 2013 9 am to 5 pm at the Vanderbilt-Ingram Cancer Center 2220 Pierce Ave Nashville, TN 37232. Please feel free to print off the flyer at the top of this page and post it where you live, especially if you live in the Nashville area. I have included links to the pdf and gif versions below.
To register for the conference and to find more information about it visit: http://tinyurl.com/netcancer
Did you know that one of the most famous people in the world died from a NET Cancer? Yes that is right, Steve Jobs the co-founder of Apple had a type of NET Cancer. Also Dave Thomas, the founder of Wendy’s, died of Carcinoid cancer. Carcinoid cancer took over his liver – he did not die of liver cancer as most media reports. It was Carcinoid cancer. Both Walter Payton and Audrey Hepburn also died from a form of NET.
For more information about Carcinoid/NET Cancer visit:
Please share the Facebook Event Page with all your friends:
As well as another post of mine about NET: