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69 Reviews
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March 24, 2014
1 person found this review helpful

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1 previous review
August 9, 2012

Having cancer of any kind is overwhelming and scary. Having a rare cancer is almost unbearable in the beginning. Finding doctors, technicians and other people with your cancer can become the hardest p... more

March 24, 2014
1 person found this review helpful

I would not be able to see the light at the end of all of the medical decisions we have to make if it were not for Maryann and her husband who put in countless hours for all of us. We have a navigation system in place that seizes to exist without their hard work. All of the information needed is gathered and shared openly and with a kind heart, they guide us to the information and help we need. Carcinoid has made us all connected and we have all learned that you must help one another. The medical world seems to be waking up to carcinoid and all the distinct care people need with this cancer. Without advocates like the Carcinoid Cancer Awareness Network INC, this would not be happening. Grateful for them everyday.

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?

2014

August 9, 2012
1 person found this review helpful

Having cancer of any kind is overwhelming and scary. Having a rare cancer is almost unbearable in the beginning. Finding doctors, technicians and other people with your cancer can become the hardest part of your life. To care for your disease, you have to gather as much knowledge as you can in the shortest amount of time. I can honestly tell you that the resources available on Carcinoid Cancer Awareness Network are invaluable. This organization has saved many lives. Please know that we are grateful for their kindness, passion, strength and knowledge of this cancer. We can also share our own experiences with each other and bridge the gap between us. We are from different states, countries and continents but at the push of a few buttons, CCAN brings us together. I found the best surgeon in the world to take out numerous tumors from my husband's liver and all across his abdomen from using this site. This is a well informed, well respected group.

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

March 21, 2014
1 person found this review helpful

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March 21, 2014
1 person found this review helpful

MaryAnn has done wonders to increase the knowledge both of patients, caretakers and the medical profession in general of Nets, the proper treatment,etc. she tirelessly organizes conferences, talks to anyone who calls her and is an inspiration to Carcinoid patients because of the way she has handled her own battles with the disease
March 21, 2014
1 person found this review helpful

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March 21, 2014
1 person found this review helpful

I was diagnosed with Carcinoid Cancer 2013. I had my surgery December 6 2013 to remove the prime location that it started at. I was lost on what step to take next. I went to three doctors that gave me different answers. I'm so thankful I found Maryann who also lives in Long Island and attended one of her meetings at Long Island Jewish Hospital. She gave me all the information I needed and led me on the right path on choosing my next step. Maryann has kept in touch with me since I spoke to her. She has given me more information than the doctors have! I'm no longer scared and feel safe that i can ask Maryann any question and know she will have an answer. I love the Zebra bracelets :)

March 20, 2014
1 person found this review helpful

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March 20, 2014
1 person found this review helpful

A year and a half ago, my husband (the zebra) and I (the caretaker) were at our wits ends. Four different doctors told us there was nothing we could do and just take the wait and see approach. I kept researching only to be told "we don't know enough about this cancer". One day, I decided to do something that I just wasn't sure about but I figured what the heck. I went onto facebook and typed in "carcinoid cancer". I found this group called the Carcinoid Cancer Awareness Network and told our story. Within minutes, I received a response from a woman, named Maryann, who would change our lives for the better. She gave me her phone number and asked me to call her. I immediately did and finally I felt someone could understand and possibly help us. Maryann gave me an email address to a doctor in New Orleans and told me exactly what to do and what would happen. It went down exactly as she described. Within a short period of time, we received all this helpful information from Maryann and within weeks we were in New Orleans meeting an unbelievable team of doctors. My husband and I now were given a new approach and a new way of looking at this. This is truly an amazing foundation that has helped so many patients and their families through their rough and uncertain times and has brought us all together. Maryann, as well as her family and the Carcinoid Cancer Awareness Network all let us know that we are not alone in this battle whether it be with a phone call, email, conferences, walks or galas. The Zebras and their caretakers are so lucky to have this wonderful foundation in our lives.

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?

2014

March 20, 2014
1 person found this review helpful

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March 20, 2014
1 person found this review helpful

The individuals that run the Carcinoid Cancer Awareness Network, Inc. (CCAN) are amazing, talented, and compassionate. The level of assistance they provide to patients of this rare disease goes well beyond expectation. How many groups do you know that you can call day or night, 7 days a week? In addition to one-on-one counseling, they show their sophisticated organization skills by holding dozens of conferences to bring the relevant parties together. They helped organize the first ever lung carcinoid conference, including bringing the world's top expert on this disease to the US from Europe. Imagine, prior to the year 2013, there had never been such a gathering. Further, they show their dedication to helping to find a cure by raising funds for doctors and researchers. Individuals who contact CCAN can have confidence that they will be given accurate and timely information to obtain the best prognosis possible.

Ways to make it better...

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

Provide them with more funding so they could expand their services

More feedback...

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

A lot

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

March 20, 2014
1 person found this review helpful

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March 20, 2014
1 person found this review helpful

This organization made it possible to have the first conference for lung carcinoid patients. It was so helpful because information for us is very scarce and the best specialists were brought in.
March 20, 2014
1 person found this review helpful

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1 previous review
April 26, 2013

Being diagnosed with carcinoid cancer is unlike facing other cancers....there are no familiar ribbons, rallies or races for support and connection. Most doctors misunderstand carcinoid and even the c... more

March 20, 2014
1 person found this review helpful

CCAN is such an amazingly helpful & important nonprofit! Cases of carcinoid cancer increase daily yet so little is known about this unpredictable disease. As a patient, my misdiagnosis of cancer for nearly a DECADE and doctors with grossly outdated knowledge, is sadly the common experience. Even after carcinoid is confirmed, most don't know what to do so they treat it like other more commonly understood cancers - which can be deadly to carcinoid patients. CCAN's work reaches far across the realm of carcinoid....24 hour patient & caretaker hotlines, free mailed info packets, support group funding, social media awareness, educating patient, public, pharma, and medical teams through innovative seminars and dozens of conferences each year. CCAN also coordinates large donations toward research by working with pharma. There is no CEO or other salary here, CCAN is actually a very special family dealing with carcinoid cancer themselves and working passionately to bring awareness, help and HOPE to thousands every year.

Ways to make it better...

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

Create unlimited funding 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?

2014

April 26, 2013
5 people found this review helpful

Being diagnosed with carcinoid cancer is unlike facing other cancers....there are no familiar ribbons, rallies or races for support and connection. Most doctors misunderstand carcinoid and even the cancer.gov and American Cancer Society websites give dangerously inaccurate information!

Thank God for CCAN! Despite being a small organization, they continue to achieve incredible results with things like their free hotline where you can talk directly with an experienced patient/caretaker team, wonderful information packets mailed upon request, helping nationwide carcinoid support groups, and doing so many other things nobody else does for carcinoid cancer patients!

I'm a lung carcinoid cancer (aka "lungnoid") survivor who started a facebook support group and wanted to work with my wonderful carcinoid oncologist (Dr. Eric Liu) to hold the first-ever lungnoid conference. Lung carcinoid is even more rare and there is VERY little support for us. No profit to be made from us. But CCAN stepped in, and not only funded and produced an AMAZING, history-making Lungnoid Conference at Vanderbilt University in Nashville (April 2013), they paid for the only lungnoid expert in the world, Dr. Dan Granberg, to come in all the way from Sweden!

CCAN made it possible for Dr. Granberg to see patients in Nashville for an entire week, then help more than 100 attendees at the Lungnoid Conference with his presentation and interactive Q & A session. For twenty dollars, attendees received not only a full-day conference devoted just to lung carcinoid and the opportunity to learn from and interact with a team of caring experts, but a lovely breakfast AND lunch, beautiful advocacy messenger bag filled with information and awareness goodies, a spiral-bound notebook with all the Powerpoint slides from every presentation at the conference, and most importantly, a chance to connect with others facing this unique and lonely cancer.

CCAN does not have a corporate staff making large salaries. This is a FAMILY doing all these amazing things. A family with a mom who got carcinoid cancer and decided that nobody else would face the struggles alone like she had. That mom is Maryann Wahmann and she has singlehandedly changed the face of carcinoid cancer with her amazing determination, energetic personality, and compassionate spirit.

Making a donation to CCAN isn't going to line the pocket of a salaried employee, it's going to pay for printing costs and stamps for packets to be shipped out weekly to newly diagnosed patients, for conferences to educate patients as well as medical communities, for advocacy and awareness (did you know CCAN is responsible for the zebra-stripe cancer ribbon for carcinoid?) - for things that really matter and truly make a diference for every carcinoid cancer patient and anyone who cares about them.

Thank you, CCAN, for being the family and face of carcinoid awareness, for helping to educate the world that carcinoid IS cancer, and that nobody facing it is ever alone! xoxo :)

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

March 19, 2014

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March 19, 2014

Hello, This organization is amazing. They were so helpful to me. They sent me very imformative information in the mail along with very educational DVDs to watch regarding neuroendocrine cancer. I'm very thankful for them.
March 19, 2014
1 person found this review helpful

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March 19, 2014
1 person found this review helpful

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.

Ways to make it better...

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.

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?

2014

March 19, 2014

more


1 previous review
June 22, 2011

CCAN is the result of a truly dedicated team focused on the support of Carcinoid/Neuroendocrine patients and their families. more

March 19, 2014

For years, CCAN has been there for Carcinoid/NET patients, and they strive steadfastly to educate the medical community about these orphan tumors. CCAN is there for you...they deserve to have all of us in their corner as well.

Ways to make it better...

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

Emphasize the need to fight insurance carrier denials and help prevent patient/family bankruptcy by helping to negotiate with drug companies which provide the costly medications.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2013

June 22, 2011
1 person found this review helpful

CCAN is the result of a truly dedicated team focused on the support of Carcinoid/Neuroendocrine patients and their families.

The Great!

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

I've participated in a patient-oriented conference sponsored by CCAN.

Ways to make it better...

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

Perhaps the single suggestion one could make would be to ensure that NET physicians are available to discuss specific patient questions as they are raised. I recall reading with some pain the story of a patient who travelled to South America for surgery for a Carcinoid lesion of the heart when 5 prior patients with a similar problem had been managed with targeted nonsurgical therapy by the Mt. Sinai team in NYC. This type of patient could benefit from appropriate physician input at a critical time.

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