My name is Alex, and I am 25 years old. I was married 11-09-2019, turned 25 11-22-2019, I was admitted to the hospital 11-26-2019 for Pneumonia, and then diagnosed with a Neuroendocrine Tumor of the left lung 12-02-2019. It was a whirlwind of a month for me. Upon my diagnosis I was told that my Carcinoid tumor (The term the doctor used when diagnosing me and explaining the situation) was "no big deal, and that as far as cancer is concerned this is a good and easy one to get!" I was not given any information further about my condition. All I knew was that I was going to have to have surgery to take the tumor out, and that a pulmonologist office would be in touch with me for some breathing tests. I was released from the hospital 02-05-2019. Due to my severe pneumonia (that turns out was caused by the tumor blockage) I had to be on heavy antibiotics and wait for it to clear up before I could go any further with my care. (they suggested 2-3 weeks before it would be cleared enough to do any type of tests) About a week after being released from the hospital, I decided to do some research. Yes, I did what everyone tells you not to do, I Googled!! I was horrified!! All I could find at first was older information about Carcinoid tumors that pretty much told me I was going to die. Upon further research (after I had a small mental breakdown) I was lead to NCAN. After realizing that Carcinoid is Neuroendocrine, I was able to get some real information. NCAN has been a blessing. NCAN and my support group on Facebook (loveable lungnoids, which includes members of NCAN) have helped me in so many different ways. I was able to find information, support, answers, and best of all a community. Honestly I feel lucky to have this cancer because of the community it brought me to. I only hope that other type cancer patients have the same type of support and resources! I honestly can not imagine what my diagnosis and my journey would be like if it wasn't for them. I had my surgery to remove my tumor 01-23-2020. My surgeon was unsure at the time of surgery if we were going to do a lobectomy or a pneumonectomy. I went into surgery unsure of if I would come out missing part of my lung or all of my lung. Turns out the tumor was larger than they realized and yes they did have to do a pneumonectomy and remove my entire left lung along with 16 lymph nodes. This was done by a thoracotomy, unfortunately VATS or other robotic surgery was not an option for me. NCAN was a great resource leading up to surgery. It gave me information on what I needed to know before, during, and after. It made me aware of the dangers of carcinoid crisis, and what I needed to do to make sure my doctor knew about this and was prepared to act in the event it happened. NCAN also helped me in knowing what type of tests and scans I needed and exactly what questions to ask my surgical and care team. NCAN also lead me to a NET specialist locally that I was able to go see (after surgery) and add to my care team! I am now NED, and NCAN still continues to be a big resource in my life. I am now looking at my life post NET and I still feel lost sometimes. Maryann, the founder, is amazing. Maryann connected me to her daughter Tricia who was able to talk with me about some of my post NET life concerns. It was one of the best conversations I have had in a while. I am so grateful to both of them for the amount of time they took with me and the information and advice they were able to give. They honestly care about the members of the NET community! My experience with NCAN has been a life altering and life saving experience. I am not kidding. It seriously helped me through the toughest time of my life, and continues to help me. I know that this NET battle is a life long battle, and I also know that NCAN is going to be there for me and all NET patients through it all! I am proud to be a Zebra! I attached some pictures. The first picture is my mom and I day of surgery, the second is me the day I moved from the ICU, third is me walking the halls of the hospital (about 8 days from surgery), and the last is me 11 weeks post surgery!
My wife has been a NET survivor for 14 years. It wasn't until we found NCAN, that the world fealt a bit smaller, and the information became more clear.
Their work has pushed patient information to levels we couldn't have imagined 14 years ago.
This organization has helped so many people deal with this rare cancer. I have seen first hand how helpful the founder, Maryanne Wahmann has been to numerous patients. Thank you for this organization that has helped so many.
I have seen first hand how this organization has helped so many cancer patients. This is an extremely helpful, knowledgable and caring organization .
Three years ago after being diagnosed with NETS, I began to research my disease on the Web and came across NCAN. I called MaryAnn and she was very helpful. She immediately sent me information and told me of their upcoming conference in Michigan. Within 2 weeks my wife and I drove from Florida to Michigan and received helpful information and met other NET patients. Since then we have attended several more of their conferences. NCAN, MaryAnn and her husband Bob are great and we are very appreciative of their organization.
I was dx in 2012 from a colonoscopy!! This foundation helped me very much!! I am a stroke survivor and cannot attend conferences or even donate but they sent me a packet with tons of information that has helped me thru my journey with this Cancer!! I really appreciate all they do for us !! We learn from them & I try to talk about this type cancer to anyone who will listen!! The regular Cancer society just sent a page of info on this where as this org. sent a big packet with CDs & info on what tests we should have to how to talk to others about our Cancer!! Thank You for all you do for us!!!!
When I became unhappy with the quality of care and lack of knowledge from my former Dr, I blindly chose a NET organization to contact to see if they could recommend a better choice. When I called, Maryann was actually on the road on the way to a nice vacation! Within minutes, I received a call back and was given quite a few names to choose from. I also got an info packet and that became my go-to since I was still relatively newly diagnosed! NCAN has been an almost endless source of info and they do so much for the Zebra community because THEY REALLY CARE!!!! I cannot thank them enough for getting me on the right track to managing this new normal I deal with every day. Had it not been for them, I honestly would've most likely stopped seeing a Dr altogether!!
I was diagnosed with the "Ah Ha,...that's what's been wrong with me for years disease", NET Cancer, in April 2015. I was so confused with the little information provided on the Internet and physicians' knowledge. Then I found NCAN, and they sent me information at no cost to me. They provided contacts and materials that helped me understand more about NET Cancer, and pathways that are available to meet during my lifelong journey.
Very helpful, provides lots of support and education. They have worked very hard to share information and resources. The conferences they develop are outstanding.
Thanks for all your hard work and help.
When I called, I never in a million years would have believed the care with which my questions were answered. I was directed to the best physicians and facilities and I truly believe that without them, I wouldn't be alive to type this today. Highly recommended.
Founder of this foundation back on 2003 and became the non profit in 2004. It has been a great pleasure to work with our family and team to help thousands through the years! We will continue to serve the Neuroendocrine and Carcinoid community through many avenues such as our toll free support line, conferences, information packets, and the support of research when funding is available!
The founders/leaders of this group never stop. They never stop getting educated, educating, conferencing, answering phonecalls from scared patients, planning informational conferences, informing doctors, working with drug companies, traveling to get and give information, and so much more. They are unsung heroes, respected and admired by so many.
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.
I was diagnosed in 2008 and had surgery in January of 2009. While recovering from surgery I looked up Carcinoid and found CCAN (now NCAN) and called the 800 number. The next day, I received a large package with all sorts of information about this rare cancer and its treatment.
I was also invited to the support group meetings, which where coincidentally held in my home town. Over the years I have stayed with this support group and attended many conferences run by NCAN. This enabled me to learn about my condition and anticipate future needs and treatment options before my condition warranted it. I especially love that the conferences are targeted to doctors as well as patients and they bring in the top doctors in the field to present the latest information so that patients and their physicians can understand what is different about this cancer and how it is treated.
I also must mention that Bob and Maryann Wahmann, who tirelessly run the organization are the warmest, most amazing people I have met. Whether friend or stranger, they will go to great lengths to make sure that each patient/client receives exactly the help that they need.
My cousin was diagnosed back in 2005, and he continues his fight today. The family is always searching for any information they can gather and always coming up with a few new questions, so it is wonderful to know that they found someone like MaryAnn which has been such a help with information, guidance and support.
Review from Guidestar
They don't answer emails and they block patients from their forum site without explaining why.
This is a great group that sponsors conferences and gives patients information. They also help out as a patient advocate for people in need of that type of care. All of the information is useful and can alter the way a patient treats their disease. I am a patient and have been to several of NCAN's conferences. They are well run and a great way to meet other patients and see the doctors who treat this disease. I'd highly recommend a new neuroendocrine cancer patient get involved with this group.
I was diagnosed with carcinoid cancer in 2010. This group is quite helpful in putting on really informative conferences where the most experienced doctors speak to patients about neuroendocrine cancers. I went to a conference in Long Island last year and it was very helpful in understanding this disease.
The free info packet gave me much more detailed and accurate info than my oncologist. It almost certainly saved my life. I am very grateful this organization exists.
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.
Carcinoid is such an orphan disease that not many patients nor their physicians know much about it. As a result, diagnosis is always delayed for years. Worst of all, once the diagnosis is made, the treatment offered by the treating physician is often outdated and passive. For years, the fight for carcinoid has been uncoordinated, disorganized, dysfunctional and extremely ineffective. Patients suffered from lack of correct information or receiving outdated wrong information. Physicians who are interested and specializes in the field also suffered due to the lack of forum to express and educate patients or each other. Maryann, Bob and the whole family has made such a dramatic improvement for patients and carcinoid specialists as a whole by different means through the nonprofit organization CCAN, which they established and are absolutely devoted to. Throughout the years, CAAN has provided patients with support, information, and guidance by a 24/7 phone consoling, printed teaching material, and educational videos on an individual bases. On a grand scale, CCAN organizes regional and national patient conferences by gathering leading experts in the field to provide patients with an in-depth overview of their disease and the available updated treatments. In addition to help patients, CCAN also supports physicians who are interested in this orphan disease with funding for research and educational process. More importantly, they are always there for physicians who are interested and devoted to carcinoid treatment. MaryAnn, Bob and their family has been the most important ally’s for us who are committed to the tough fight against this intriguing disease. CCAN has an undeniable contribution of the progress made in the fight against carcinoid in this country and North America! The Wahmann’s family entitled the recognitions for their efforts/contribution and CCAN deserves all the financial support and funding from our generous general public. Yi-Zarn Wang DDS., PC., MD., FACS. Professor of Surgery, LSUHSC-New Orleans.
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.
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
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!
This nonprofit keeps me informed daily on my cancer and treatments. Without them I would be lost of any information about this rare cancer.
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
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 :)
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.
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.
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.
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.
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.
Those of us with Carcinoid Cancer know how hard it is to get correct info and to be diagnosed. Even after we are diagnosed, most doctors do not know how to treat us. With all of this going against us, CCAN is there to get us correct info and to let us know which doctors know how to treat this rate disease. They are just available to talk if that is what we need.
This non profit organization is the best!!
What can I say about CCAN, is that first hand Maryanne, Founder of CCAN has changed my life along with the treatment regimen I am now receiving. She has also has helped my children, siblings. cousins, as well as the Carcinoid community, since I am of the rare breed with a family history of Carcinoid. Maryanne directed and urged me forward to attend my first CCAN meeting in Indiana a year ago, in order to learn, investigate and find the correct path of where to be directed with my own personal care. I am truly grateful for her and CCAN's direction. My cancer care now has the correct coarse of action to keep me as well as possible. Thank You, Maryanne!...... Thank You CCAN!
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!!
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.
San Diego, CA
I have been working with the CCAN organization for many, many years. The educational services and information they provide to patients and caregivers is invaluable. They should be commended for the work they do and the countless hours of their time they give! I would not hestitate to donate funding to support this wonderful organization. Continue the great work Maryann and Robert! You are truly inspirational.
I can't say enough good things about CCAN. They are dedicated to the increased awareness of neuroendocrine and carcinoid and going beyond the normal call of duty to help people. They are an amazing resource and an amazing family. I am honored to call them colleagues and friends. Together we will help people all around the country learn to take control of their cancer!
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"
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!
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.
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
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.
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.
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.
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.
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.
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.
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
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
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.
My 43 year old husband was diagnosed this April (2012). Shock, saddness, and sprinkle on top that it is a cancer that no one I know has heard about. The great thing about CCAN is they fill the void when someone needs help now.... not in a week but just a phone call away. All weekend every day... they answer the call... They deserve to be recognized for all the wonderful work they do... I would gush even more but my husband is in the hospital and I am working on little sleep.
When I was first diagnosed I had no idea what this type of cancer was and what to expect. From this group the information was complete and the people were guenuine in the caring nd desire to fil me in and answer all my questions. Without them I would have blindly followed care plans made by medical personnel unfamiliar with the disease and would be far worse off than I could ever imagine. It's been almost 2 years since I first sought their advice and they ae still thee when I need them. They are the best!
I proudly support this charity and am pleased to be a volunteer in this organization. They strive to provide much needed information to patients with this disease and also to those treating them. They provide all kinds of assistance to support groups across the country and also sponsor much needed and valuable patient education conferences to help increase awareness and promote understanding of Carcinoid and neuroendocrine cancers.
For those of us in the Carcinoid Cancer/NET community it has often been difficult to find information and support. However, Carcinoid Cancer Awareness Network (CCAN) and Maryann & Bob Wahmann have made it their priority to provide this to us. They have dedicated their time and much more to bring mini seminars to regions across the United States, they have used their 501c status to receive grants and funds from sponsors for numerous patient/caregiver conferences, and they have made available informational literature to help us educate ourselves & others about this chronic disease. As a support group leader, CCAN has also made available to me numerous promotional items such as Zebra pins, Carcinoid/NET bracelets, and stuffed zebras along with educational brochures. These have been wonderful to have for my support group meetings. CCAN also sponsors numerous fundraisers and awareness (as their name suggests) activites. Education & awareness of Carcinoid/NET is the key and CCAN plays a hyge role in making that happen.
CCAN has been a great source for information and support in the past. They have always been prompt and thorough in any requests I have made. They are truly working to increase awareness and early detection of this disease!
We count on them to send the info we need to educate doctors and newly diagnosed patients in our local support groups. (This is a disease called "rare" which is clearly much more prevalent and usually misdiagnosed for decades up to and including death. Educating MDs will save lives and educating patients will change imminent death to a long life with a manageable chronic disease.)
I'm a carcinoid patient, stag 4, and have been helped by information provided in the mail, and information on a telephone conference with experts speaking about our cancers. I'm very thankful for all the information and help I got from this group.
I woke up from a routine surgery only to find out the doctors found I had Carcinoid Cancer. From there, pretty much all roads lead to "Carcinoid Cancer Awareness Network". I don't know how you could have this cancer and not been helped with knowledge, support and genuine caring hearts. When I was diagnosed, like so many others I didn't know where to go for help. CCAN helped me with information, slowing me down on decisions and taking a step back to breathe. I felt like there was HOPE. That was the first thing I needed to know. Leah
i was diagnosed 10/2009 and the local doctors where I live didn't seem to have enough knowledge on Carcinoid Cancer. They gave me approx. 6 months. Maryann at the Carcinoid Cancer Awareness Network sent me the information I needed to understand this disease, educate my local doctor and know that all hope was not lost. Thru the network I found a Carcinoid specialist/team that is helping me.
This organization stepped up with a donation of bracelets, pins and literature to help with our last support group meeting. Everyone was astounded at the volume of information and dedication that MaryAn and her team have for our cause..Carcinoid! We love and charish them!
Carcinoid Cancer Awareness Network is truly a godsend! My doctor called and told me I had Carcinoid cancer and not much else! I googled it and found this amazing website. It has an easy to navigate layout with pertinent up-to-date information. I was feeling hopeless and confused until I found the information I needed to understand my disease.
This charity has done a remarkable job of ensuring that conferences take place regularly - - both international and regional - - on the rare neuroendocrine cancers, including carcinoid. CCAN has also stepped in to help new local support groups get started and have the resources to continue - and to help publicize these rare cancers by marketing relevant pins (with zebra emblems) and other materials contributing to publicity and public education. I speak from experience as a family member of someone with carcinoid disease who has also tried to further education and publicity.
My brother in law has Carcinoid Cancer and this year I put on a fundraiser to raise money and awareness. Maryann with the Carcinoid Cancer Awareness Network got me everything I needed to help get the word out. I still keep the brochues in my businesses the the Carolina's. We need more people as dedicated to helping people understand and deal with like they are going through like Maryann with the Carcinoid Cancer Awareness Network.
Cancer support providing information and education for families and patients with carcinoid cancer.
CCAN truly provides critical life changing and life-saving help for patients with carcinoid cancer. Neural endocrine tumors (NETs) is a relatively unknown cancer and many local physicians dont know much about its treatment. my daughter was diagnosed with carcinoid cancer about 4 years ago, had her right lung removed, and still had residual cancer. CCAN helped us survive this ordeal by linking us with other patients and family members (and even the few doctors who specialize in carcinoid cancer) where we could find information, guidance, experience, and hope. CCAN sponsors conferences that are incredibly valuable to keep patients and their families updated on the current advances in treatment. through CCAN we were able to connect with the right doctor who recommended the right treatment that has resulted in my daughter having "no evidence of disease" now. we have seen many other patients with NETs on CCAN chatpages who have no idea what to do and who are able to get the information they need to save their lives. CCAN is priceless!!!
This nonprofit organization is run by a wonderful person that is unbelievably committed to the her cause. Maryann Wahmann spends so much time focused upon increasing the awareness of Carcinoid Cancer and goes far beyond what one would expect for any patient that seek education. A truly worthy cause.
CCAN is a great organazation that has helped both patients and their families deal with this illeness and the effect it can cause both mentally, physically and emotionally on every memeber of the family, including the patient and the famiy members too. It's nice to have people who can relate and listen and give advice and guide in the right direction. What a wonderful organazation!
Up until 3 years ago, I had never heard of Carcinoid Cancer...I have since had the pleasure of becoming close friends of the Wahmann Family, and have had the priveledge of being part of the CCAN experience....Watching Maryann and Bob spend time with Patients, families and doctors, Making people aware of not only the Disease itself, but the treatments available, who to call, what drugs to try has been such a rewarding experience for me to watch from an outside position The World needs to know about this disease, and CCAN is the organization to get it done!
After being diagnosed a year ago with carcinoid cancer I felt helpless and alone. I spent countless hours researching my disease. During this frantic time I decided a support group would probably serve me well and I went to a meeting in N. Bellmore and met Maryann Wahman. I found the meeting very informative and open to questions from its members. I knew it was where I was supposed to be while on my journey. Maryann is always there when you need her and certainly a fantastic "support" team leader. I thank her from the bottom of my heart.