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69 Reviews
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June 22, 2013
1 person found this review helpful

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June 22, 2013
1 person found this review helpful

My husband was diagnosed with small intestine NET two months ago. We attended the CCAN conference in Michigan a few weeks ago. Even though the information was overwhelming and sobering, we felt far better prepared to face this new reality. The information on the CCAN website has helped us to know what kind of medical help that we need. We are so thankful for this amazing resource!!

Ways to make it better...

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

Make sure it is well-known.

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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

June 20, 2013
3 people found this review helpful

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June 20, 2013
3 people found this review helpful

The information and education I have received from CCAN has been truly life saving. I had little to no access to resources in my medical community about Carcinoid Cancer of the lung. I am a survivor because I connected with the right people at the right time. CCAN deserves every honor and award for the invaluable support they provide to Carcinoid Cancer patients and our families. God bless them and their outstanding work.
Icela Gonzalez,
San Diego, CA

Ways to make it better...

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

None!

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?

2013

June 11, 2013
3 people found this review helpful

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June 11, 2013
3 people found this review helpful

It was in 2009, 4 yrs after my husbands dx, I learned about CCAN. Many things regarding follow up, I was not aware of, such as labs, scans etc. the organization has been such a tremendous help, not only to us, but many others. We have been to several conferences both regional and national. I know at any given time if, I have a question or concern I can pick up the phone and call Maryann! CCAN "ROCKS"

Ways to make it better...

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

Nothing

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?

2013

April 27, 2013
4 people found this review helpful

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April 27, 2013
4 people found this review helpful

After diagnosis, on the operating table, with a lung carcinoid tumor I was told it was not really cancer, it was out and go and enjoy my life. While in substantial post- operative pain for many months, I had to ask to see an oncologist and pour over the Internet to find out information and help. CCAN was a wonderful source of information and led to other ways to contact the carcinoid community, providing much needed advice ( it is cancer!) and how I should be followed from now on. Recently, I was lucky to be able to attend the world's first patient lung carcinoid conference at Vanderbilt University TN and hear talks from one of the very few Us experts and the world expert on this disease. it also made all the difference to be in a room of people who 'get it' , when faced with a rare disease. This event would not have been possible without the hard work, organization and support of the wonderful people at CCAN. They are doing a fantastic job, Thank You!

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?

2013

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.

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?

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

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?

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.

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?

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.

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

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 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

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