Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
74 Reviews
1234.986495
Write A Review
March 4, 2015

more

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.
February 28, 2015

more

February 28, 2015

I was diagnosed in June 2013 after having surgery for an unrelated issue. My carcinoid was found during surgery. I spent 15 months doing the wait and see approach that my oncologist recommended. I had a sister-in-law that was going to Sloan- Kettering and she talked to her doctors about my situation. They did not recommend the wait and see and gave her several internet sites to research. I found CCAN and they where awesome. At the same time they where sponsoring a conference and I signed up for that. They had the best doctors in the nation speaking at this conference. I gained so much knowledge from this conference. It changed my life and I am now proactive and have the tools and guidance I need. This is truly a "Nonprofit" They send out a wonderful packet of information to those patients that contact them. All phone calls are returned any time of the day or night. Great organization. Thanks, Teresa
February 28, 2015
1 person found this review helpful

more

February 28, 2015
1 person found this review helpful

I was newly diagnosed in June 2014. I was able to attend a conference put together by this wonderful organization in September. I was absolutely amazed by the amount of information I was able to gather. My husband and I were very impressed by the gifted speakers and the flawless execution of the daily events. This was done over a course of 3 days. I cannot imagine the work that must have gone into this event. We left with a better understanding of my disease, a plan for treatment and, as a bonus, many new friends. A big thank you to these lovely people who work tirelessly for all of us. I am so very grateful!
February 28, 2015
1 person found this review helpful

more

February 28, 2015
1 person found this review helpful

This nonprofit keeps me informed daily on my cancer and treatments. Without them I would be lost of any information about this rare cancer.
February 28, 2015
1 person found this review helpful

more


2 previous reviews - show all
September 27, 2012

This is an amazing grass-roots organization that educates the public and carcinoid cancer patients. It is run by a couple in Long Island who started with nothing. The wife is a carcinoid patient who a... more

February 28, 2015
1 person found this review helpful

This group is one of a kind. The dedication of this couple to helping educate cancer patients about this cancer is unparalleled. This is the premier group to contact if a patient wants to know about carcinoid and neuroendocrine cancers. They keep up to date and have helped so many patients through their hotline, website, and conferences. Their fundraising efforts are many and have led to involvement by the foremost medical efforts in the field.
September 27, 2012

This is an amazing grass-roots organization that educates the public and carcinoid cancer patients. It is run by a couple in Long Island who started with nothing. The wife is a carcinoid patient who answers her phone night and day, runs conferences (the last one was in NOLA and had more than 450 registrants), fund-raising walks and galas and has come up with a large amount of money for research and support.

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

June 1, 2011
2 people found this review helpful

I have seen this organization grow larger for the last 8 years. The education program is phenomenal, involving the key professionals in the area of carcinoid cancer and neuroendocrine tumors appearing at every function. This group represents international and national patients. The fundraisers are conducted in a professional manner and more and more people have been educated and helped by the money raised by this vibrant, undying, and unrelenting organization run by a woman with carcinoid cancer and her husband and other family members. The founder has appeared on radio programs, television programs, and has been a keynote speaker at many of the professional conferences. She is articulate, caring, and always available to those who have a need or desire to know about these diseases which have been virtually ignored, until recently, thanks to her work and the works of others.

The Great!

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

I have attended events, read the brochures, seen patients who have been helped by this organization, met doctors foremost in the field, attended an annual gala, listened to Ms. Wahmann's radio appearances, explored the web site.

Ways to make it better...

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

No changes. This is a very professional, efficiently run outreach and education program.

March 24, 2014
1 person found this review helpful

more


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

more

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

more

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

more

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

more

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

Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers