CARCINOID CANCER FOUNDATION

Rating: 4.86 stars   7 reviews

Issues: Mental Health, Health, Cancer

Location: 333 Mamaroneck Ave # 492 White Plains NY 10605 USA

Mission: CCF's mission is to educate patients, healthcare professionals and the public regarding carcinoid and related neuroendocrine tumors, to bring about greater awareness of these rare cancers, to support NET cancer patients and their families, and to serve as patient advocates. There are at least 110,000 people living with carcinoid/NETs in the United States today, with approximately 11,000 new cases diagnosed per year. The philosophy of CCF is to disseminate accurate, up-to-date information about diagnosis, treatment, and surveillance options to maximize survival and quality of life for those individuals who suffer from these rarecancers. We strive, as do the multitude of carcinoid/NETs national and international experts, to find a cure. CCF works closely with both U.S. and international medical experts, patient advocate organizations, and support groups. Since 2010, the Foundation has been a member of the Worldwide NET Cancer Awareness Day Alliance, an international organization dedicated to bringing about greater awareness of NET cancers. The Carcinoid Cancer Foundation, the first and oldest foundation of its kind in the United States, has earned worldwide recognition as a resource for patients, medical professionals, and researchers. Over 1,125,000 people from more than 100 countries worldwide have visited CCF’s website, considered to be one of the most authoritative sources for neuroendocrine tumor (NET) information.

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Community Reviews

Rating: 5 stars  

As a lung carcinoid patient over 12 years out from diagnosis, I have turned to the Carcinoid Cancer Foundation numerous times. It is the place to go for accurate information and if you need individual questions answered the foundation will respond with-mails or phone calls. I am in relatively good health for a carcinoid patient thanks to early diagnosis and good medical care and the foundation played an essential part in my situation. I have recommended the Carcinoid Cancer Foundation to many people and although my donations are small, I do not hesitate to donate my hard earned dollars to this charity.

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Rating: 5 stars  

Like so many others , my diagnosis with carcinoid of the mid-gut was a total surprize. I had several colonoscopies and no word of this dreaded disease. Then, while on vacation I was hit with a recurring feeling of bloating and back discomfort, much like a gallbladder attack, since I already had my gallbladder removed, and funny it was for the same symptoms. However, a thorough exam and a biopsy of , of all things , my colon, showed carcinoid and I was advised to get surgery quickly. I had the surgery at the same time and as they searched for the cause or related tumor, they found a large one in my intestine which along with other necessary actions they removed tumors in my lymph nodes. I have Stage 3 cancer. Luckily , my loving wife researced the word carcinoid on her blackberry while at my side and found The Carcinoid Cancer Foundation and Dr Richard Warner. When I got home I made an appointment to see him and I learned that I was suffering from a rare form of cancer. Patients of this cancer like to use a Zebra as a symbol to represent our oddity and sometimes invisibility in a forrest of shades of white and black (the cancer spectrum).

I am glad I found CCF and this amazing group . They are so caring and courageously face their world ahead with solidarity and stride. They also make me feel like I can also face my future in the same way,and that is,with hope and assurances that together we can learn more about our disease, and help to make out of this knowledge we share together , a better life. Please help support this great organization. I give it a resounding 5 POINTS!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 4 stars  

1 person found this review helpful

I was diagnosed with carcinoid cancer of the small intestine two years ago. My tumor was caught very early by my gastroenterologist during a colonoscopy. I received excellent surgical care as well, but after that no one seemed to know what to do with me. They could not make any recommendations as to who should follow up with me or what tests should be performed. After visiting the Carcinoid Cancer Foundations's website, I called them about doctors in the Memphis area. They called me back right away with the name of a doctor in Nashville who had just started a Neuroendocrine Tumor Clinic at Vanderbilt. I wasn't there five minutes before I knew this was the place I should be. Finally someone knew and understood my cancer! Thank you Carcinoid Cancer Foundation.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

Hi! I was diagnosed in 2005 with carcinoid of the small intestine with mets to nodes. I did not understand how rare this form of cancer was. I was told if I had to have cancer, this was the best kind as it is slow growing. I started to research NETS and I learned much from this site! I haave learned that something can be done about this form of cancer and we can be survivors for many years. This site is extremely resourceful and I am thankful for it. Recently I have now become a survivor of breast cancer. I am thankful to still be here and I will continue my research of NETS as I am now on 40 mgs of Octreotide. Thank you!

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

In February of 2011, I was diagnosed with carcinoid cancer which had metastisized to my liver. I had never heard of carcinoid cancer and was desparate to find out all I could. I did a search online for information and was blessed to find a wealth of information on the Carcinoid Cancer Foundation website. Everything I needed to know in dealing with this disease from understanding what I needed to know being newly diagnosed to a list of specialists in the field was found here. I also found a community of caring individuals who are either personally dealing with the same things I am going through or who have loved ones battling carcinoid. I found encouragement, understanding and a willingness to go to great lengths to get me and my family the information and help needed as we begin this journey. I cannot express the depths of my gratitude for this foundation and all of their knowledge and the lengths they go to in keeping those of us who are battling this disease informed with the latest information on this rare form of slow growing cancer.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

In 2010 I had a gynecological surgery. When the pathology came back, I found out I had carcinoid cancer! No one could tell me much about it, other than it's the slowest growing cancer, so let's just wait and see. Doctors learn about it in med school and will probably never see a case. My oncologist monitored me for 2 years when another tumor was found. I went to the Carcinoid Cancer Foundation, received vital info as well as the names of the stellar physicians who know everything about this disease. I learned you shouldnot wait and see. It spreads to the liver and other places. My tumor was recently removed as was the primary tumor and I owe it to CCF.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

2 people found this review helpful

After an 8 year search for cause of pain and then huge weight loss (from 160 down to 98#) I got my Carcinoid diagnosis in 1995. All I found on-line then was I would be dead within 2 to 5 years, that was unacceptable to me. The Carcinoid Cancer Foundation put up their web site in 1996, and I put up my site (the first by a patient) in April 1997 www.carcinoidinfo.info. I was able to consult with Dr. Warner (the Medical Director) via phone and mail. Finally since the 4 oncologists I consulted with in AZ said to "learn to live with it", "this is a chronic disease" they were all "wait and see". In Feb. 1998 I went to NYC to consult with Dr. Warner in person and he turned my life around. He gave me my good quality of life back, he is my hero! I say the CCF's web page is the "GOLD Standard" for Carcinoid information.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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