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Paula47

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3 reviews

Review for Neuroendocrine Cancer Awareness Network Inc, Fort Mill, SC, USA

Rating: 5 stars  

There are no words to adequately express my gratitude and appreciation for Neuroendocrine Cancer Awareness Network (NCAN) and for everything they do to bring awareness, hope and education to the NET cancer community. Under the tutelage of Maryann and Bob Wahman NCAN has touched and impacted the lives of NET Cancer patients in ways that far exceeds other organizations.

NCAN, makes every effort to educate and encourage NET Cancer patients and their families. Upon contacting NCAN the patient or caregiver receives a ' NCAN New Patient Package' which helps the patient to better understand NET Cancer and how to navigate the NET Cancer journey. NCAN provides hope where there was none.

NCAN hosts National Conferences and Regional Seminars in which acclaimed NET Cancer Specialists present topics on treatments, surgeries and nutrition. During these events the patients have the opportunity to ask questions and often receive valuable information to share with their local doctors. Also, the patients have the opportunity to meet other NET Cancer patients and create strong friendships. This may be the only time a NET Cancer patient meets a fellow patient.

NCAN, keeps the costs associated with attending the events to a minimum. Neuroendocrine Cancer is an expensive cancer to treat and many patients have lost or given up their jobs as they are too sick and fatigued to work. In addition, NCAN posts many presentations on-line in order that as many patients as possible have ever access to the material.

Many NET Cancer patients are told, 'NET Cancer is the best cancer to have.' I can't agree with that statement but I irrevocably state that 'NCAN is the best Nonprofit group for NET Cancer.

Role:  Volunteer
 

Review for Neuroendocrine Cancer Awareness Network Inc, Fort Mill, SC, USA

Rating: 5 stars  

I am approaching my 4 year anniversary of my Carcinoid/NET surgery and I am thankful everyday for the people who have offered me encouragement, shared knowledge, and helped educate me about this devastating form of cancer. Carcinoid Cancer Awareness Network is at the top of my list of people/groups to thank. May 14, 2011, I was in the emergency room with a blockage in my small intestine which required surgery. I was shocked to learn the blockage was caused by a malignant carcinoid tumor but was assured the Doctor removed all the tumor and I would be fine. After all," this is a slow growing tumor, it is the best type of cancer to have and I would feel better than I had in years".
I went home and kept waiting to feel better, I waited for one and half years and I was not improving, if anything I was experiencing more problems. I started searching for information and came across Carcinoid Cancer Awareness Network and I contacted them immediately.
I can not begin to express what a difference that phone call made in my search for answers. CCAN talked with me, not at me, and provided information about Carcinoid/NET, helped connect me to support groups and mailed me an informative packet.
This past September I attended a Carcinoid/NET Conference sponsored by CCAN and was in the company of other patients and the top Doctors who specialize in Carcinoid/NET cancer. I was amazed at the low cost to attend this conference, how organized it was and how much I learned. It was very clear the speakers were dedicated to making a difference in the quality of life and life span of patients.
CCAN is available to us every day and offers a warm voice and caring person to answer our questions, help soothe our nerves and point us in the right direction. I cannot say enough about what a wonderful source CCAN is for people living with a rare type of cancer where there is little awareness.

Role:  Client Served
 

Review for Neuroendocrine Cancer Awareness Network Inc, Fort Mill, SC, USA

Rating: 5 stars  

I had a carcinoid cancer in 2011 and underwent surgery to have it removed. After 117 days in the hospital and undergoing 15 operations I was sent home and told I was cancer free and basically only needed routine scans. Needless to say, I was very sick and very frightened with no one or anywhere to turn to for answers to my questions.

I found CCAN on line and I was able to reach out and find not only answers but support. CCAN is truly an outstanding support group which offered me encouragement when I truly felt overwhelmed by my health conditions. Through CCAN I have bonded with people who are going through similar situations, sharing our bad and good days. The CCAN website has valuable information about Carcinoid and NET Cancer, information that most doctors are not aware of. In addition, CCAN mails a packet to new patients which has much information about Carcinoid and Nets. It is very helpful in orientating new patients and leading them to be proactive in their care.

Carcinoid and NET Cancer is a rare a barely understood disease and patients can be confused who and where to turn to for answers. Frankly, as a patient who was told go home and do the best you can, I knew there had to be another answer. CCAN helped me find those answers.

If I had to make changes to this organization, I would...

I think they are a great but I know they could use more assistance.

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?

2014

Role:  Client Served