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69 Reviews
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April 26, 2013
3 people found this review helpful

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April 26, 2013
3 people found this review helpful

I am forever grateful for the many services of CCAN! After being diagnosed with Carcinoid CA in January, I began researching online to learn as much as possible about my cancer that most people have never heard of. The greatest "hit" that I made while "Googling" was CCAN. I did a request for information and in a few days received an amazing package full of information, DVDs and most importantly a DVD of a presentation by Eric Liu, MD of Vanderbilt-Ingram Medical Center. I do have a local oncologist who is currently treating me and he is very excited to learn about Dr. Liu.

There was also a schedule of many CCAN events and I went to the recent conference in NYC which CCAN organized. I learned so much but was particularly impressed with Dr. Eric Liu, Maryann and Robert Wahmann.

Maryann Wahmann and her organization are responsible for me attending this life-changing event. I am now a patient of Dr. Liu and will be traveling to Nashville for treatment and surgery by him.

This is an exceptional organization and people can contribute to it knowing that their contribution will be used wisely to help Carcinoid Cancer patients.

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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

April 24, 2013
3 people found this review helpful

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April 24, 2013
3 people found this review helpful

As a 3 year NET patient, I was not aware that I should have been followed more by my doctors. Through CCAN's awarness network and the programs they provide, I learned that I should have been more closely followed by my oncologist.
I am now in the process of getting the medical follow through
that I should have been receiving for the past 3 years. This is truly a life changing event for me and it wouldn't have been possible without CCAN and the wonderful work they do and provide. They made me realize that I am in charge of my medical care1
Thank you so much for all you do!
Ronda Bogani Ayala, RN

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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

April 24, 2013
3 people found this review helpful

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April 24, 2013
3 people found this review helpful

When I was first diagnosed with carcinoid cancer, my oncologist told me there was nothing to be done but an injection once a month, then maybe clinical trials when that quit helping. I was reluctant to search the internet and pick up false hope chasing windmills and fake cures. But, I finally decided I had to turn to the internet, because I was getting no information about the disease from my doctor. I found CCAN, requested their information packet, watched videos from the conferences they put together. I was amazed at just how much more could be done to help me than what I had been told. And I have sought out that help. I am so very grateful to CCAN for all they do.

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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

October 18, 2012
1 person found this review helpful

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1 previous review
June 22, 2011

When I was told I had carcinoid go on the internet and look it up, I found all kinds of information ,some trying to sell me things. I was scared and upset. Carcinoid as I was told was rare and no one ... more

October 18, 2012
1 person found this review helpful

THE CARCINOID CANCER AWARENESS NETWORK helps change lives of those living with carcinoid cancer. They help to educate, motivate, and emotionally support patients and their families. My experience with the carcinoid awareness network has been nothing but positive. They have help me to find doctors better understand my diagnosis. They've also help me to communicate with other people but the same diagnosis and find support.

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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

June 22, 2011
2 people found this review helpful

When I was told I had carcinoid go on the internet and look it up, I found all kinds of information ,some trying to sell me things. I was scared and upset. Carcinoid as I was told was rare and no one knew very much about it. All I could think was what now? I went back to the internet and found Carcinoid Cancer Awareness Network with a phone number. I called and was sent all kinds of up to date information. This information has been lifesaving. CCAN has and is always there for me to this day as I head into 4 years past diagnois. I don't know how I would manage without them.

The Great!

I've personally experienced the results of this organization in...

When ever I have a question all I have to do is call. I am sent information on events where I have learned new studies and the results and how to monitor carcinoid.

Ways to make it better...

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

I really do not know of any changes I would make. They have been wounderful.

October 16, 2012
2 people found this review helpful

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October 16, 2012
2 people found this review helpful

I walk every year for this cause as a dear friend of mine suffers from this disease and CCAN has helped so many people. You hear it constantly from everyone at all the fund raisers on how CCAN helped them through a crisis and their kindness is never ending. It needs help in getting the word out to more people as this is a rare cancer that most people don't even know about yet.

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Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

October 4, 2012
2 people found this review helpful

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October 4, 2012
2 people found this review helpful

When I was diagnosed with a rare cancer, there was very little information found on the Internet . Thanks to CCAN I found referrals to doctors the knew the diese as well as good information on treatment. They are always available to help with any questions. They also help organize a conference for patience to learn more about this horrible cancer.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

October 1, 2012
2 people found this review helpful

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October 1, 2012
2 people found this review helpful

This cancer is such a rare kind that it is hard to find up tp date information on new research. CCAN helps to provide such information. It also provides contacts with others who have the same cancer. The national conference sponsored by CCAN was very informative and worthwhile attending.

More feedback...

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

October 1, 2012
2 people found this review helpful

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October 1, 2012
2 people found this review helpful

After many years of not having anywhere to turn, or real information on carcinoid cancer/nets. I found the CCAN and i got all the real information about my cancer, that not only myself but my drs could refer to. LIFE SAVERS... sums it up

More feedback...

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

October 1, 2012
2 people found this review helpful

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October 1, 2012
2 people found this review helpful

CCAN was there for me when I was first diagnosed with carcinoid cancer. They actually answered the telephone in person and spoke with me about where to find additional information and how to research treatment options. They continue to serve the carcinoid community and do an outstanding job.Thanks to CCAN. Lesley C

More feedback...

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

October 1, 2012
1 person found this review helpful

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October 1, 2012
1 person found this review helpful

I just attended the CCAN Conference in New Orleans and this was the first time I have personally met anyone from this dedicated group , although I had heard about their work from my oncologist. What a first impression they made and they kinda messed up because they must have thought they had already knew me. At least that is the way I felt after the first hour or so. They were terrific! And , I could not believe some of these individuals stories concerning Carcinoid. I found out some were patients like myself , at all stages of this life sapping disease, but they were mostly , I believe just concerned activists, family members and dedicated workers in the field trying to do their utmost to help support anyone that needed that support after getting a diagnosis. I learned that Carcinoid patients , more correctly called NET Patients or Neuro Endocrine Tumor Patients are self described ZEBRAS ( our distinguishing logo)- Another shade from all those who suffer in all too many cases -terminal cancer. Not many people especially doctors and researchers even know we are "out there" . Our zebra stripes camoflauge us in the shadows of the effort to find a cure for cancer. And often that more common cancer research does'nt help us directly. These dedicated workers in CCAN are out there spreading the word and educating individuals like me on how to simply use all the resorces out there and each other to stay alive . It can be easily seen how dedicated and selfless CCAN is in doing this VITAL work. Please support them in any way you can . If you are a foundation, a medical facility doing research or a Medical School I urge you to look for any way you can help. I feel truly grateful for what I learned last weeik and for all the materials and speakers that had to be gathered together for such an event. I don't feel so much alone now. Please help in any way you can -just ask CCAN they know.

More feedback...

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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