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March 30, 2015

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March 30, 2015

I was first diagnosed with Neuroendocrine ( Carcinoid ) Cancer in 1999. I was so lost and and no where to turn for many years. Then I found NACAN. I first came in contact with Maryann in a support group. I was trying to soak up and learn as much as I could. NCAN and Maryann really guided me in the right direction. With out them I would have excepted my grim fate and would not have gone after one of the few specialist we have that saved my life. I am stable now and a support group founder of 500+ members. I send every new member in my support group to NCAN for their amazing new patient packet that ONLY NCAN offers. Over the past 3 years of running the support group, NCANs guidance has helped sooth so many scared patients (and families) and pointed them in the direction they need. NCAN continues to reach out to the community to bring awareness and information to not only patients but Doctors. Neuroendrocine is such a forgotten and misdiagnosed cancer that a lot of the time it is found too late. I truly believe that this organization has opened the eyes of our community to hope. I became an independent advocate because of the kindness and support I was shown by this group. I will continue to pay it forward to others til my last breath. Thank you Maryann and NCAN for giving me the courage and knowledge to keep fighting this battle.
March 11, 2015

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1 previous review
March 20, 2014

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 kep... more

March 11, 2015

We are almost three years into our journey with carcinoid cancer and couldn't have done it with CCAN now known as NCAN. Thanks to Maryann and her family, many families have been given the knowledge and resources to deal with their cancer. They are truly an amazing family and have helped so many. They make us feel like we are not alone. If we have a question, we just call and they are always there for us. From conferences, to cruises, to walks, CCAN is always there....We are so lucky to have them in our lives.
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 4, 2015

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March 4, 2015

I was diagnosed 8/8/08 with Carcinoid cancer. Doctor told me well if you had to get cancer this is the one to get. I am saying he is crazy. At the same time he said it was terminal 12 tumors in liver. They may exend my life a few years. It was inoperable and they would not look for my primary tumor. Even if they found it would not take out. This was a very rare cancer. He was saying no hope just doom and wait to die. Just felt loss hopeless. Top it off had to go to work and see about my kids. Unbelievable each doctor I had at that time said best cancer to get if you had to get. They had no information on disease and did want it. Just went by limited information they had and just passed me around.
There was no plan since doctor said terminal.
Well time passed searched for information and found ICAN in Indianapolis. I learned of ICAN through them. For website I learn exactly what I had and found a Doctor at Ohio State University, Dr. Manisha Shah. She made me realize I can live and focus on that. I did and 2012 they removed my primary tumor in ileum, gallbladder, appendix, most of my left lobe of liver. She discontinued Sandostatin and I am still here. Some times I forget I have carcinoid tumors in liver. The point I want to stress how important NCAN is so old and new patients. It makes a difference in the quality life and your health to have correct and updated information. NCAN provides that.
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 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
1 person found this review helpful

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March 19, 2014
1 person found this review helpful

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
1 person found this review helpful

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1 previous review
August 13, 2012

After being diagnosed I struggled to understand this cancer. I was told about the carciniod cancer awareness site. So thankful for all the help. When I requested a packet of info. It arrived with... more

March 19, 2014
1 person found this review helpful

The packet of information I received has been the greatest help In battling this cancer. I have taking copies to all my local doctors to insure proper care. With out it they didn't know how to treat this cancer. It's the first place a newly diagnosed person should go for information.
August 13, 2012
1 person found this review helpful

After being diagnosed I struggled to understand this cancer. I was told about the carciniod cancer awareness site. So thankful for all the help. When I requested a packet of info. It arrived with in a couple of days. Thanks again.

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?

2012

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